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Monthly Archives: August 2015

Elizabeth stayed with the rest of the family this weekend. This has given me a break and lots of opportunity to catch up on things in the home Saturday I met up today with some members of Speak Out Against Psychiatry.

It is usually impossible for me to get on with so much as I only have the weekends and I am alwayst taking Elizabeth to various places over the weekend.

Not having Elizabeth has given me to get on with some writing and I have had lots of letters to write this weekend.   I will tell you more about these in due course but one letter I had to write was to the Neurologist and put him in the picture regarding the referral of the larger scanner.   I keep having to put the appointment back and I am getting fed up with this and it would seem that the GP is asking the Neurologist to do the referral and now he is asking the GP.  I can see I may have no option but to take some time off to sort this out.   I have requested from both the names of those concerned in authorising such referral.

Anyway Elizabeth had a nice time away with the rest of the family and we had a visit today from my guest blogger, Stephen who has been advising Elizabeth on healthy eating.

I have heard from the Professor in Holland but I will tell you all about this when I get the full results in due course.  At least I know these results will be based accurate and not on a  trial and error basis.  These tests could benefit everyone and ultimately save money.   Not one doctor would help with the analysis but when you are prepared to pay you find there are doctors who are very good in helping.

There are a few events coming up which I wish to attend and I will write about these due course.  I have always to ensure that someone is with Elizabeth as such events at the end of the day would be too much for her.

I am in touch with a quite a few mothers right now who have sons and daughters incarcerated in “secure” wards when they should not be on such wards and have never committed any crimes or are a risk to society. There is a real need for change in the system that keeps such young people incarcerated for many years to the point of disablement and there is no consideration given to the physical health of these vulnerable patients who are given enormous quantities of drugs.    I am hoping to share what I am doing in due course and hope such establishments will listen and take on board the need for accuracy in assessing.  I can tell you that I am already pleased with what I have been told so far.

There also needs to be more legal support available for families who wish to have their sons/daughters/relatives out from hospital.  It is totally unjustified to write someone off like rubbish when there are many who have not committed crimes and are stuck in their situation because they have become dependant and cannot manage in the community to look after themselves properly.    It would cheaper to give support to families and carers instead.   Whilst we have no support in my area if I can have Elizabeth home then so can some of the other mothers.    How can anyone get better if they are put in an environment where family contact is discouraged and security is so tight- worse than prison. The parents I am in touch with should be given support and assistance if it is the wish of the patient to come home and the patient should be listened to and given that  chance.   It is very wrong to use coercion in trying to influence someone vulnerable in their decisions and someone who is weakened by high levels of drugs.  When Elizabeth first came home she was very quiet but she is speaking up now and it is good for her to come to the conferences I have been attended and meet the wonderful professionals who I cant thank enough –  other professionals should learn by their good example and this is what I like about the organisation ISPS – when you have had a bad experience it is very encouraging to meet those who are in favour of change and supportive of things like open dialogue.

There needs to be transparency but confidentiality can sometimes be played upon for the wrong reasons.

I posted on Twitter about Court of Protection today.  I have certainly not had bad experiences as far as this Court is concerned however I am critical of a system that does not protect the weak and vulnerable and allows discrimination and the outcome of some such cases should be looked at very carefully –  I cannot say too much at the moment as I am waiting to hear more but I definitely feel disabled people are not treated fairly and when some have been made disabled because of being drugged for many years, misdiagnosed etc then I feel this should be carefully looked at to ensure a fair outcome in court.

Occasionally I like to feature guest bloggers and Stephen is knowledgeable about ingredients and healthy eating.

It is great that Stephen has a good influence on Elizabeth when it comes to diet and he has come out shopping to suggest healthy alternatives.  Sometimes you do not get listened to as a mother and I am throwing away all the unhealthy takeaway brochures that come through our letter box so I thought I would feature something a little different as healthy eating is essential to mental health wellbeing.   As a mother who wishes to see Chy Sawel set up offering an alternative to excessive drugging of enormous quantities (and I am not the only mother who feels this way) I hope you will like the article I am featuring.  It certainly gave me something to think about when I went shopping with Elizabeth and Stephen as I would just buy without studying the labels and now I pay more attention.  GUEST BLOGGER – Stephen   (press view rotate view as it is scanned upside down!) –  I wanted to fit in every word and do not have the time to type it up right now.   When I get more time I shall do this but, in addition, Stephen has some good videos and one I particularly like which would be most relevant to this blog.

This weekend I have taken Elizabeth out shopping together with someone we know from the Natural Health Centre.  I have never really stopped to consider reading the labels on food products but this was clearly an expert who is taking an interest in Elizabeth’s wellbeing in terms of diet.  I may feature this person as a guest blogger in the near future and who could write on health tips and food products.

The next day we were up bright and early as an important appointment was awaiting Elizabeth.   Since Elizabeth has come home from the care home nothing in care has been provided and  Elizabeth understandably does not wish to see certain team members and neither do my carers.   Elizabeth has now had extensive tests done on her physical health through a wonderful company who I will mention at a later stage.  In the meantime I am still awaiting news on the assessments for the other diagnoses mentioned in the files.   When you prescribe a powerful drug like Clozapine there should be regular reviews but there has been nothing apart from the provision of the chemical and the blood test.  We do not even know the name of the consultant psychiatrist.   Elizabeth accompanied me to a plush venue for the physical health tests but was advised not to eat beforehand.   Every time we go out Elizabeth gets herself worked up to a state where she is virtually physically sick.   Another awful thing is that whenever I take her out to eat she can end up choking and I have questioned if she has bulimia but of course she denies this.  It could just be anxiety that leads to her suffering like this after eating.   After the appointment I had taken Elizabeth to a vegetarian restaurant which made a very pleasant change.  I am still glad I do not dish out pills like sweets such as Lorazepam (as and when required) as I know that Elizabeth will eventually settle down and relax.

Today (Sunday) I wanted to escape my local area and we visited a country town and had lunch in a nice pub there.   The same signs of anxiety were apparent initially and then of course once out Elizabeth settles down so it is good to persevere and occasionally Elizabeth will grab your arm but nothing like when she came home from the care home where she was like an elderly person who needed support.  What should be provided is some kind of therapy to overcome her fears of going out but no one cares.

Today I have written to the Ombudsman in response to a complaint.  I feel I am very justified in complaining in this instance but it is not a matter of compensation that counts with me, it is a matter of principal and I would rather see a  proper investigation conducted and appropriate steps taken to ensure  that something does not occur to anyone else.   No-one wishes to take any kind of responsibility and it is easy to get away with matters under the mental health where you are dealing with vulnerable people, many of whom do not have the strength to stand up and challenge things and it is a good job that I do have plenty of strength to stand up for matters that I see as being very wrong.   Such matters need to be addressed to the very top in my opinion with everyone copied in so that a solution can be achieved and I hope to share more with you in due course.   This matter should be addressed at Government level.

I have not checked on the situation as regards strikes (two in one week proposed) and am bracing myself for difficulties this week.   I intend to go in as per usual no matter what.

Anyway I will keep you informed as to how things go with these tests and if anything serious is discovered how Elizabeth is treated and whether any kind of review of current treatment will be given and in the meantime I wonder how the Professor in Holland is getting on.  I will wait until I receive the extensive test results before contacting him and the other private doctor.   I propose to send a copy of the tests to the world’s leading expert and I am very happy that I have secured what should lead to the correct outcome that no one will be able to deny when proven by evidence.

Having seen the headlines of the Daily Mail “GPs face axe for handing out too many pills”   – Crackdown as 10m prescriptions dished out needlessly – this refers to antiibiotics and the article goes on to say that doctors who dole out too many antibiotics risk being struck off.

It is being recognised that prescriptions rates are spiralling dangerously out of control and now the Health Watchdog wishes pill happy GPs to be referred to the GMC (General Medical Council. In extreme cases the would case suspension but otherwise a course on correct practice would be recommended.

I must write to the Health Watchdog myself about this article.  The article centres on antibiotics and overuse means they are becoming powerless against lethal infections.

If I was writing this article about overprescribing I would centre on the most shocking cases I am in touch with and how young patients are written off and used like human guinea pigs and given enormous quantities of drugs.  Why just  mention antibiotics – why not mention ANTI-PSYCHOTICS AND ANTI-DEPRESSANTS.

The article goes on to say people are addicted to the idea of having antibiotics – well I am not!  I would not touch any poisonous chemicals and even if I have a headache I do not like taking a paracetamol.

The Health Correspondent who wrote this article should do another one and I would like her to feature the enormous quantities of drugs given to patients who are labelled under the MH for conditions that do not even exist.  Pity that NICE do not look into this and that the GMC does not look at every individual case of maximum drugging given to patients under the MH.

So it is noted “overprescribing of antibiotics risks the health of us all.

Well what about overprescribing of anti-psychotics without a proper assessment to check on diagnosis- huge levels of concomitantly prescribed  drugs given to the weak and vulnerable.

Perhaps the Daily Mail can do another article featuring this kind of overprescribing and the centre of attention should be psychiatrists.

Some very uncomplimentary things have been written in the files not only about myself but my carers (close friends and immediate family) who have given so much help and support when needed.   Elizabeth too has been written in a nasty way behind her back and this I object to – I could not care less what is written about me but I do care what is written about Elizabeth and my carers.  It is disturbing to think that these files are records you cannot erase and that the next team will look at these files and take them as being true.  A prisoner gets treated better than a patient under the MH.  The times I heard patients begging to go to prison instead.  It is important that I correct these files but this will take plenty of time as there are so many things wrong in them.

I know that if I did not have the support of close friends and family during that crucial time when Elizabeth first came home, Elizabeth may have been forced back into care and sectioned, contact with myself severed.  It is so good that Elizabeth felt able to confide in me in the way she did and I put two and two together to realise what was going on and I was 100% correct.  Whilst I was told there were no plans to get rid of me there was talk about her father being “next of kin” and of course if a section had been imposed, then he would have been regarded by the team as Nearest Relative and I would have been displaced.    All the time they made out they had no intention to displace me.  I am so glad Elizabeth did not go back to that care home rated as “good” by the CQC where there was suddenly a poor signal in her room.  She could have so easily become lost and trapped in the system whereas now she is doing well at home.  No-one should be lost or trapped in a situation of endless imprisonment but this is all happening in the UK and it is not true that many of these patients are a risk to society or to themselves.   The fact is they may not be able to manage in the community and support and help is not being provided as it should be.

since coming home a year and three months later, no problems whatsoever with Elizabeth but who could blame Elizabeth or my carers in light of all that has been written for not wishing to see the team. There is the matter of the missing files which I have had to apply for as a safeguarding exercise.  Not once has the new consultant psychiatrist been in touch to see how Elizabeth is or offer a reduction in these chemicals.  I see this as a sign that none of them could care less.   They only cared about dishing out dirt in any way they could to present to the court who they thought would favour the team.  In fact the Judge was standing next to Elizabeth and I when I was praising the Court of Protection for past help they had given me regarding my father with Alzheimers.  Anyway from what I  have read in the files the last consultant psychiatrist from my local area was more interested in the state of my house than Elizabeth’s health.  She slated my home which was being decorated when Elizabeth came home as I had an extension built which created a lot of work.  She should have been more concerned with Elizabeth’s health than my home and in contrast the Police commented on what a nice home I had.

I am still waiting to hear from the GP regarding those referrals but things are not looking that hopeful. I have mentioned I would like to know the names of the people concerned and once I took time off specially to go down to the commission office and this was a good move on my part.  These referrals cost nothing compared to what has been spent on private sector care and a “specialist” hospital.  I could see £2500 spent on court but I am certain that much much more must have been spent on this case and previous cases and now I am saving the NHS money but an article I saw today in the Metro speaks about diabetes and this is why minimal levels of these diabetes-causing drugs should be given.   To spend money on assessments which should have been given in the first instance is peanuts compared to what I see has been wasted.   I await the final decision with interest and will let you all know in due course.

I would like to share with you all an article I read today’s Metro.

5m diabetes patients by 2025 ‘risks ruining NHS”   – The articles says this is going to bankrupt the NHS –   “a £10billion annual bill likely to spiral out of control” – well I would say things are already out of control in terms of spending other ways and I am not thinking of diabetes here and I thinking of vast sums of public money being wasted and not being spent as it should be.   There is talk of NHS priorities and these priorities should be – better care but in Elizabeth’s “special” case,  priority was not care or wellbeing  it was to dish out as much dirt as possible against me for court purposes and taking someone to court is expensive and sending someone to private sector care is also expensive. The article goes on to say –   “We need to prevent obesity in the first place”  –  I am disgusted by these comments as Elizabeth has gone from a size 10 to 16 and has little energy,  can hardly take part in the zumba class that we have just joined.   She used to enjoy sporting activities such as running and belonged to a running club and took part in charity runs.  Since coming out of the care system Elizabeth has developed Agoraphobia.  I have tried to get Elizabeth to walk halfway up the road by herself but she is too afraid.  Elizabeth has a personal trainer who comes twice a week who takes her out but apart from this nothing whatsoever has been provided but then Elizabeth does not want to see social services – who can blame her having read the files.  The Court case concluded without settlement of any expenses Elizabeth incurred for attendance such as fares and I think that is bad.   I think it is terrible how vulnerable people are treated in this Country.    As regards this article I would have written……………. How about the truth – diabetes Type II is caused by psychiatric drugs and professionals know all about this.  The full truth is not relayed to patients clearly and anyway Elizabeth, even if she had been presented with facts/ information to read, would not have been able to  focus on it as she was on such massive doses of mind altering drugs.  At the Bethlem they ignored her Advance Declaration to put her on Clozapine which from the start she made clear she did not want to take.

Thank God she is home – I could so easily have lost my daughter to this system and since coming home everyone has commented she not only looks better but is doing well.

Every night Elizabeth helps me clean the kitchen, wash up stack the dishwasher correctly, put away things in the correct place.  Yes I do have to repeat myself to her but she willingly does all of this and I wonder what she has been doing over the past years to end up as being so dependent on others. I am working on her now to become independent and also to encourage Elizabeth to speak up for herself.  It is wonderful to go to the conferences run by ISPS and confidence building.  At the ISPS conference she takes part in activities. I would like to take Elizabeth to some of their conferences abroad.

Also I am taking Elizabeth to help alongside me at homeless suppers.

So no news on any of the referrals and I will have to chase these up and I am still waiting for certain test results.

I have applied to be on a carers committee recently but I don’t know whether they would have me.  I have applied to another organisation once and was not accepted.  I would have plenty to say on the subject of care and treatment but doubt I will be considered “suitable”.

On a happier note looking back over the past two weekends, it has been wonderful to meet up with all my school friends, all of whom would know Elizabeth when she was very young.  It felt like being on holiday visiting one of them who has moved to a country town and we walked around and explored the area.  Elizabeth settled down as always after a while but sometimes she feels physically ill at the thought of going out.  It was a nice day out anyway.

The past weekend, Elizabeth spent time with the rest of the family whilst I met up with former patients.  Elizabeth will also be going to stay with the rest of the family August Bank Holiday.  If she had been with me I would have taken her again to Big Feastival and maybe camped there.  I thoroughly enjoyed going to this event last year.   I do not stand in the way of Elizabeth from seeing other family members- why on earth does this appear in the court papers – this is totally untrue along with many other things that are totally untrue.

I have hardly had any holiday this year and I am not sure what to do/where to go.  It will be wintery weather by the time I take my holiday and would be better to go abroad but would Elizabeth get on a plane – I wonder.   I wanted to take her to New York to the ISPS conference but I think at the moment a long plane journey would be too much for her.   I would like to go to Ireland or somewhere abroad not too long re travelling time.   It is really good to be able to share things with Elizabeth now she is home and wonderful to see her do so well and make an effort.

As I have previously mentioned, Elizabeth has more than one diagnosis and I believe that all of these diagnoses should be thoroughly checked out and I do not this has been done and that one label is recognised simply as a means of convenience.  Only an expert in the field of Aspergers can diagnose someone and the same goes for PTSD, both of which are mentioned in the files.  Why has Elizabeth not been referred to such specialists before being put on Clozapine which they say she has to take for the rest of her life.   I do not think it is right that these diagnoses should be dismissed especially as PTSD is evidence-backed and when someone has suffered trauma for instance and this can result in injury if the wrong treatment is given.  I have looked into all of this thoroughly and have research to prove it.  It is traumatic in itself to be on one of those acute wards and not everyone can adapt to this and in Elizabeth’s case and from what I have read  an acute ward was certainly the worst placement for Elizabeth and untherapeutic.  Now Elizabeth is in the right environment  – home and I have seen huge improvement especially now we are not being harassed any more for court purposes.   However I rely on close friends and family to help me, taking her to appointments, blood tests, collection the chemicals. Transfer of care has not gone ahead which means collection of blood packs is a fair distance away.   Whilst nothing is being provided – no assistance given whatsoever, the only thing given is the drugs.  There has been no review of these drugs in over a year, no therapeutic treatment given whatsoever but the care is integrated and stuck with the department that took me to court last year and that is most probably the reason – anyway Elizabeth does not wish to see anyone in this team as the comments in the files are very nasty and there is an enquiry going on right now. That is “secondary” care for you.  However if nothing is available under secondary care the one thing that should be provided to Elizabeth under primary care is an assessment for each of the other diagnoses.  The wrong treatment could result in physical health problems and I have already discovered some disturbing things.    If someone is sentenced for something they have not done in terms of crime and sent to prison for years there is public outrage if that person is sudden found innocent.  Under the mental health you are given a life sentence and treated rotten and that goes for any relatives too who dare to challenge such treatment and even if Professional members of a team have a conscience that something is being done wrong, it is more than their job is worth to challenge anything.-  I have challenged things and as a result you are treated like a leper and you are on the receiving end of bullying.  It is bad that there are all these safeguarding standards on the one hand by professionals when on the other hand, if there are serious incidents that have happened to that person whilst under care, safeguarding seems insignificant in comparison.  Safeguarding can be used against someone like a mother or carer if there are things to hide – this is when  serious allegations can be made and that person is made to look very bad in the files and, in order to obtain the files, confidentiality and capacity is played upon. Many people have little hope in seeing the files.  However whilst Elizabeth suffers from Agoraphobia and too afraid to go out alone, Elizabeth has capacity and has been telling me about her experiences whilst under the care system.   I don’t call it care at all when a professional member of staff uses Coercion to achieve outcomes – solicitors can be recommended by hospitals –  I am dubious about advocates who are supposed to be independent after Elizabeth’s experience at the Bethlem when they were supposed to attend meetings and did not turn up on more than one occasion.

Anyway, I received no news about the assessments and was chasing up any news on these and I have written a letter but her regular doctor was not there at the surgery.  I stated that I wanted to know if the assessments are refused, by whom and the reason for the refusal.  When a vulnerable patient is given a life sentence of drugging and not one single person in my local area seems concerned – when there are no “symptoms” whatsoever and physical deterioration is evident and I have private test results to prove all else – it is shameful if these assessments are refused by the NHS.   The NHS has spent a fortune on private sector care and “specialist” in patient care at a so called renowned hospital where I can see drugs were given at maximum levels contra indicated drugs which I have since challenged.  So much money has been spent on legal action to get rid of me but there have been severe failures in protecting Elizabeth whilst under their care so I can see.

Anyway, tonight I waited in the surgery for the opportunity to speak to a doctor as I have missed several calls whilst travelling home on various occasions but today I was supposed to receive a call at midday and did not so in the evening I decided to call at the surgery in person.  I was told that I was booked in for a phone call only and that no one would see me.   The Doctor knew I was in the surgery waiting room as I mentioned it but I had no choice but to have to speak in front of others in the waiting room – it was raining outside.  I had to explain my concerns regarding the assessments and one of the assessments had not been considered and I was told that it was NHS London? as I tried to find out who was looking into this.   An assessment costs between £500 and £600 each and I think that is a small price to pay when thousands are being saved right now – now that Elizabeth is home.    There have been previous assessments so I see from the files  – one assessment was to a Neurologist who recommended optimising the drugs.  Well whatever for!   In contrast the  other Neurologist has called me a very “good mother”  – well that makes a change from all the shocking things I have been called in the files.   I am not interested in being slated – my interests are the treatment of Elizabeth and I am astonished at the way a team of professionals can blatently ignore physical health and not properly look at the drugs being given and suggest optimising them knowing full well that they do more harm than good so I am quite right as a mother to look into matters further which I have done and to thoroughly read research papers.   So I was not impressed with the outcome of today’s phone call and felt it was undignified talking for five minutes in a waiting room in front of other people which I felt could have been better granted in private.  Everyone could hear what I was saying.    I asked the name of the person in charge of  referrals but was told that decisions would be decided by a panel .    At the end of the day someone is responsible and if it is a matter of funding then this really interests me a great deal having seen how much has been spent. I may be wrong but somehow it does not look hopeful that Elizabeth will get these referrals – I hope I am wrong here and I will certainly let you all know how I get on with this as a young person is condemned to a lifetime of having to take Clozapine for one of several diagnoses (some of which I have seen that NICE Guidelines do not recommend or the BNF. I would like to see 100% regard for physical health in this matter as I have really looked into things carefully.    We don’t even know the name of the consultant psychiatrist.   I think there needs to be choice for mental health patients as  Elizabeth and I have come across some very good, caring professionals through the conferences that we attend together, some of whom are consultant psychiatrists and I am most impressed that they are not like the usual consultant psychiatrists you would expect to come across.     It is the system itself that causes discrimination by labelling and stigma caused where patients are kept down and treated like rubbish.  I have really tried to get Elizabeth away from the MH system but on these drugs given at high level how can she get a job? how can she live a life of normality.  It simply is not encouraged as otherwise more support would be given on a one to one basis but trust can easily be lost when a team of professionals go against the family.  So Mr Cameron wishes MH patients to go out and get a job and if they do not engage in care activities go without benefits?  He really needs to look at every individual case – I would love this to be possible for Elizabeth.  There could be a very valid reasons why someone does not wish to engage in a care plan –  -when there are so many others involved in helping that feel the same way until certain things are clarified, it is very understandable.   I as a mother would love Elizabeth t have a normal life.   There is nothing being provided since she came home so she is not receiving any mental health care but then I have found it to be mainly “in-house” –  Elizabeth has benefitted from being outside of MH care and there have been no incidents or causes for concern whatsoever what is lacking is counselling or as recommended in one report trauma therapy as if Elizabeth is too afraid to go out even walk up the road, this is how she has come out of the care system but at home she manages within the house to do things.  I do not think Elizabeth was taken out that often whilst in hospital.   I am paying for a personal trainer who takes her out twice a week.  I take her out as much as possible at weekends and every night we go for a short walk but when someone has been in care for a long time, they lose all confidence and the effect of the drug Clozapine is dizziness Elizabeth is not on a Section but it is like a life sentence and it could take a long time to get over Agoraphobia and be able to have a normal life.   Mr Cameron should come and meet some mothers like myself and former patients to really gain an understanding before he threatens those with MH conditions and does not seem to have any understanding whatsoever.  If a patient is lucky enough to get out of some of these shocking prison-like institutions dependent on how long they have been incarcerated, they have huge problems in the community and become isolated and lack support but everyone is different and carers/parents should be included and assisted.  Instead they get next to nothing in carers benefit.   It is certainly not because someone is lazy that they do not work.   Elizabeth is on a very powerful drug which has made her disabled and and no review has been given for a year whilst on this drug – no one seems bothered about Elizabeth’s physical health and in the past private tests have been ignored that show decline.  The one thing that the team do care about is compliance – compliance with the drug Clozapine for a condition which is very much in question and it is not in the slightest bit unreasonable for me to request proper and thorough assessments by leading experts like I have done.  I am astonished at how doctors can ignore someone’s physical health for convenience when someone has been given a last resort drug to take for the rest of their lives with no question whatsoever whether this is right or wrong.

This evening we were most concerned for Elizabeth’s cat who was having difficulty in walking and I was worried that he had consumed pesticide poisonous chemicals – a bit like the poisonous chemicals that Elizabeth herself has to take or else he could have suffered injury by the way he was walking.    Elizabeth’s cat has become part of the family and we would all be devastated if we lost him.    So I had to arrange an appointment to the vets tonight and I do not have pet insurance so being out of hours I knew this would cost money.  However what is money as Elizabeth’s cat has proved a great comfort to her during the bad times and we are letting him go out now in the garden but the vet thought he may have suffered epilepsy.   I was quite relieved that the vet properly examined him and put my mind at rest and we think that all is well.  I have told Elizabeth tomorrow she must keep him under observation.   The money spent was money well spent for piece of mind.

To all consultant psychiatrists :  animals are more therapeutic than all the drugs in the world.

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