SPEAKERS;    THE GREAT PLAINS LABORATORY, KANSAS USA – WILLIAM SHAW Ph.D

 

On Saturday last week I took Elizabeth to meet other mothers who would like to see an alternative to just drugging by way of a specialist centre that treats patients as individuals and gives proper assessments and unique care based on nutrition.    These are a group of mothers/some fathers who have sons/daughters trapped, incarcerated long term on acute wards and in care homes, some being placed a long distance away from home and these parents would like to see change in a system that is failing - you only have to look at the overflowing acute wards and demand for “care” and patients do not seem to be getting better and end up in the system long term.   Many patients along with us parents are upset to  see a system that is abusive.  Forced drugging – exclusion of families and coercion by staff.    Not every case of long term imprisonment is because someone is a danger to themselves or others but because they are so weakened by the drugs they cannot go through with a tribunal or have lost the strength to speak out and they end up becoming dependant and under control and disabled by being institutionalised.  I do not think that labelling helps and believe this to be the cause of stigma as once you get a label it is for life – this is totally wrong as people get better despite being given these shocking labels and the public are being misinformed as many cases of psychosis are caused by the drugs that a patient is prescribed.   A patient may have an adverse reaction to a drug because they cannot metabolise the drug and nothing is done in the UK to test this before giving drugs to patients. The system itself allows for the weak and vulnerable to be used as human guinea pigs and the main “care”  is drugging and ECT and I think the system is in desperate need of change.     Dr William Shaw PhD of Great Plains Laboratory was speaking at this conference  held over two days in conjunction with Bio Lab.  I  bought a book entitled “Biological Treatments for Autism & PDD” by Dr William Shaw Ph.D.    It was good to see the other parents who I have met with before on other occasions.  It was good of  Dr Shaw to spare time to meet with us and I would like to see him involved in the care we wish to see.  I have already had several tests done at Bio Lab and it is wrong of the NHS to dismiss such tests on physical health that clearly show decline.  Whilst Elizabeth was in Wales I presented these tests as evidence -  I was hoping that Elizabeth would have holistic care but it was far from this and now I see that the private sector care is no better at all -  it was wrong of them to carry on with the Metformin being given off label for weight loss    Well after meeting Dr Shaw I am really determined to look further into matters.  I am looking closely at diet and nutrition and the GP is referring  Elizabeth to a Nutritionist.   However already physical health problems have come to light and the Bio Lab offer tests unavailable under NHS.  The tests are not expensive compared to the cost of  long term incarceration of patients who are not getting better on acute wards. If such tests determine food allergies/gluten/lactose intolerance/infections and other problems then this could save money as proper attention can be given to diet/nutrition, etc.   Unfortunately in respect of Chy Sawel it comes down to funding and we discussed ways in which to raise money for this unique centre to be set up and suitable premises have been seen in Cornwall and I hope these premises can be acquired.   There is huge demand for a unique centre offering with strong emphasis on nutrition and minimal drugging and a different, more humane approach that properly assesses a patient on an individual basis.  This is what we all want and it would wonderful if we had choice in this country.   Whilst Elizabeth has adapted well coming back home after years in the system,  ultimately environment is important  and I believe an acute ward can be traumatic and stressful for a patient who could benefit more from being  in a peaceful/ natural environment  that offers a completely different approach.  There are many assumptions surrounding family if someone within that family has a MH condition and this is why I would like to see Open Dialogue..  It is wrong to make assumptions and it is wrong the way someone is put under pressure by a team to say things against the family – if for instance the team do not like you because you have had cause to be outspoken then this is reflected in the files.    Psychiatry is based on belief/ assumptions and it is incredibly easy to get a diagnosis by way of what they call symptoms.  There are plenty of labels to give in the DSM.   If something is bad written in the medical records by one expert then others will go by this- it is a vicious circle.   No-one really cares to take account of what happened to that person in the first instance and that, together with treatment of drugs means that person may not get better.  Instead counselling and alternative therapeutic care should be given.  I am in favour of OPEN DIALOGUE. The drugs should only be used short term only and not forced upon anyone.

On Sunday, Elizabeth was tired as we did a lot of walking the day before so I went alone to the Good Food Exhibition held at Olympia which was very good.  I am thinking of cancelling the gym as she is not using the facilities – it is a waste of money - there is no help in getting her there and I am paying for a personal trainer to come round to the house.  I understand my daughter has asked for extra sessions but it awaits to be seen if this will be provided for her.  There is a new Yoga and Pilates studio which may well be better.  It awaits to be seen if any additional personal training sessions can be provided as this is beneficial to her.  When I took her to the gym Elizabeth was afraid to move from the edge of the studio and was not taking part properly in the exercises.   I am hoping the personal trainer will encourage my daughter to go up the road on her own but she has not done this since coming home.  She is more disabled now than previously because she was going out on her own places but it has only been six months and will take time to rebuild confidence.    She will cling to your arm and is afraid of falling as she feels dizzy but I have seen some signs of improvement since she has come home.  Being on Clozapine does not help as this is highly sedatory and Elizabeth has complained of feeling tired and lacking of energy.

Today we have met up with former “survivors” and later visited an old lady in hospital who we have known as a family for a long time.

Tomorrow meeting school friends who Elizabeth has known for a long time and we are gong to a craft fayre.

 

 

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Speakers -  Professor Peter Beresford -  Professor of Social Policy and Chair
June Sadd – Survivor trainer and researcher – Disabled People Against Cuts
Jean Robertson-Molloy - Movement for an Adoption apology
Panel of Practitioners from Across Social Work.

I attended this conference held at John Barnes Library, Camden Road.  Sadly we missed most of it due to a prior appointment but I wanted to attend as I have become very disillusioned especially with my own personal experience and treatment of my daughter in light of recent events.  Elizabeth came with me – it is nice for her to see that there are some good people out there in the profession trying to change a system that is rotten to the core. It made a refreshing change to listen to what some of these professionals had to say and I wish they were all like this as I would have absolutely no complaints at all. I have prior to this meeting come across good social workers in respect of my father with Alzheimers and one good social worker under mental health – John Coffey I believe his name was at the Royal Bethlem Hospital. This is a professional who I could highly commend.

The comments below are taken from the poster advertisement for this day conference entitled above:
“There is a deep and continuing crisis in mental health services:  austerity driven cuts in welfare, oppressive government benefits reforms, the growing gap between the richest and poorest in society.  Practitioners and service users alike struggle with high caseloads, reduced resources and a target culture underpinned by market ideology and privatisation.  This conference is one of a series in the UK and welcomes everyone wanting to look at the problems and prospects for radical alternatives.  The Conference will also be the London launch of the SWAN initiative CHARTER FOR MENTAL HEALTH intended for activists to campaign around .  The Charter is available at http://www.socialworkfuture.org.uk.”;

SWAN (Social Work Action Network) is a network of social work practitioners, service users/survivors, educators and students united in their concern that social work activity is being undermined by managerialism and marketization, by the stigmatisation of service users and by welfare cuts and restrictions.

I agree with many things such as:

Aims:

To promote social work practice rooted in values of social justice involving advocating alongside and on behalf of carers and service users.
Challenging domination of social work services by prioritisation of budgets, targets, outcomes and market over the needs of service users.
Working alongside existing social work, social care, service user and carer organisations and trade unions on welfare cuts and privatisation, against discrimination and oppression.

Strengthen radical voices within social work by building alliances between practitioners, students, carers, service users and educators through joint campaigning and regular conferences.

Charter for Mental Health
I could not agree more: – mental health services have reached a crisis point – even the Government has been forced to acknowledge this.

Reasons for current crisis and suggestions on what needs to be done:  A starting point for discussion and action rather than definitive statement.  An alliance of resistance and contribution to the development of more and better support for those with mental health needs.

Crisis for Service Users: -  cuts as a result of Government’s austerity policies.  Closures/reductions in availability of community services/increased charges/time limited support/reduced funding for user-led organisations.  The Government’s welfare reform is creating poverty through draconian measures such as the Work Capability Assessment, implemented by private health care firm ATOS, the Bedroom Tax is another example.  This results in increased anxiety and fear – rising incidence of suicide and self-harm. How very true.

MY OWN COMMENTS ON THIS:   Elizabeth was once doing OK -  under mental health services she has been given drug after drug and label after label. Initially it was the drug Cipralex that caused adverse reactions leading to unrecognisable behaviour. No tests done first of all to see if someone can metabolise the drugs.  However when I as a mother started looking into matters and becoming more and more educated by reading the right books and have contacted the FDA on more than one occasion and also Astra Zeneca  to report  adverse reactions.  Of course nothing ever seems to be done about it.  The biggest trial is when a drug passed as being “safe” is released to the wider public and in some cases terrible consequences as documented by Dr Ann Blake Tracy.  I am speaking of what I have seen not in just the case of one person in my family but several other cases too. The effect these drugs have had on more than one person in my family has been horrific and I have seen this at first hand but I have also seen people get better in my own family especially in two cases who are no longer on any drugs whatsoever and doing fine.  This is why labelling is harmful as these labels can stick forever and besides how accurate are they?  Mistakes can easily be made with diagnoses but no one wishes to budge and this is terrible as the patient concerned is labelled for life when in fact the diagnosis may be completely wrong.   Things can never be accurate if no scientific tests can confirm the diagnosis to be correct.     I do not agree with the bulk of the labels that Elizabeth has been given as there have been so many labels - there is only one report myself and the family agree and the person who did this report has had 40 years in the business – the diagnosis given is PTSD.   Since Elizabeth has been home after 6 months I have relied on help from close friends and immediate family.  When someone has been institutionalised and used as a human guinea pig for experimentation and given contra indicated drugs and horrific care I have already documented they can come out of institutions quite disabled and then that does not exclude that person from going through assessments from ATOS who have a 6 month waiting list just to assess someone with no guarantees of that person receiving benefits.  Elizabeth has been a “revolving door” case sent to private sector care miles from home from the shocking Bethlem Royal Hospital. From there on it was not agreed for her to come home despite her wishes but now she is home from the care home we are all amazed at her progress. It is expensive to have to pay for things which would cost a fraction of the price of keeping someone in an institution. So I am not impressed with Atos – any money that Elizabeth would receive from benefits will go towards helping her – she has not walked up the road alone – she has a key but suffers severely from panic attacks before going out anywhere. It is a case of the right kind of support being provided but money is often spent in the wrong direction and used against families rather than helping families. I await the assessment through ATOS but if I was not helping her, Elizabeth would not be able to attend such an assessment. I would like one day to see Elizabeth working and being completely independent but it is not as simple as that – Elizabeth cannot function on his level of drugs – they make her feel dizzy like she is about to fall and she often has to hold on to my arm. She says that the drugs are highly sedatory. They are making her worse, not better with little energy. It is not her condition but the drugs that are making Elizabeth disabled to the point where even simple tasks are difficult but she is trying to do things herself. She feels cold even when it is hot outside and this has meant I have had to do something this weekend as regards the heating in the house which will need to be on frequently during the winter months and I have been looking into solar powered heating. There are no grants for provision in the case of disabled people from what I am aware so although you save in the long run it still means paying out first of all – not for the fitting but the panels themselves. Anyway what can I do – but not everyone can pay and end up in debt and poverty without the needed support in the community. Not everyone has the support of their families like Elizabeth.

The onslaught faced by mental health workers:
I can associate though that the growing presence of private sector providers divert NHS resources away from frontline support into corporate profits. Well I originally thought private care was better in terms of facilities and care but I am sorry to say I was far from impressed by a certain private care provider who were behind the attempted severing of contact between myself and my daughter and this in turn caused no end of upset within the family. I would describe such places as profit making – no hurry to see someone go and patients kept for years – this was not what I thought Elizabeth would receive in terms of care as I had read about Four Star Wards. This was all about strict control, this involved coercion and restrictions. I agree that pressure put on professionals by way of targets is unacceptable and mention of delays in provision of support can result in tragic consequences. However having seen what is written under this heading I am critical – swingeing cuts to community services and in-patient facilities are mentioned here – I on the other hand have seen wastage of money and as for person centred approach – nothing was provided. There is no end of money when professionals wish to get rid of a nearest relative. I am not saying all professionals are like this and it made a refreshing change to see some decent ones at the conference however my experience has been very bad. I can personally see where the money is being wasted.

The role of the market:
My experience of private sector care as mentioned above is terrible. I do not agree with the introduction of payment by results – short term therapy and medical modern drug interventions prioritize over longer term talking treatments and other forms of family and social support valued by users and carers. I would like to see OPEN DIALOGUE.

Pre-occupation with negative risk:
I wish I could say more …….However what I will say is I do not agree with this risk management/monitoring of medication compliance and controlling forms of intervention. I see this as bullying and abuse. Elizabeth is not even on a CTO yet I have documented such shocking treatment for all to see. Visit after visit by Home Treatment Team/phone call after phone call when Elizabeth said no more. This is harassment in my opinion and when someone is perfectly OK like Elizabeth they should be left alone as the family ensure these chemicals are taken – none of us want to see Elizabeth back on a shocking acute ward that is for sure.

Austerity, welfare reform and inequality:
If the Government cared about physical health then they would do something about the situation where patients are given several drugs at a time that can cause severe adverse reactions and then nothing is done about this resulting in patients returning time and time again to the wards. If the Government cared they would provide better facilities within NHS and they should introduce a National Drug Metabolising Scheme which would save a fortune to the NHS. Why should someone spend a lifetime on drugs that cause severe physical health problems. Proper tests and assessments are not being carried out like the P450 liver enzyme tests. It is all very well and good to look at the criteria from release of a section ie no harm to self or others. What about the harm that is caused to the patients by all this drugging especially in cases where someone is treatment resistant ie poor or non metaboliser. Choice should be made available to those who do not get better from acute wards. Proper look at nutrition – only doctors and nurses should be involved in medical care and I have seen that not everyone is up to date on their knowledge and should know exactly how these drugs work if they are prescribing them. If patients were on the least drugs then it would be cheaper but on an acute ward and at the shocking Bethlem Royal Hospital patients are put on huge levels of drugs. This is not only expensive but detrimental to their physical health.

What we demand:
I do particularly agree with :
An end of Community Treatment Orders.
An end to institutionalised discrimination in mental health services.
Removal of obstacles to family and community involvement
No cuts to individual budgets
Funding for crisis houses
Atos – (it is not working if you have to wait six months just for an assessment)

I am now looking at the list of names ranging from nurses to social workers and service users, homeless support workers, psychologists, students and now I have added my name and I hope to attend other conferences in future.

In the evening we went to see a fireworks display and today have been busy with shopping and cooking. Elizabeth has got on with chores she needs to do herself so the weekend has been very good and I feel she is making good progress at home. It is good to be able to take her to events like this as well as the courses and conferences I go to.

I have been taking Elizabeth out mainly during the day which was difficult before due to having to return in time for the Home Treatment team for their evening visit. Now this has stopped and this meant I could take Elizabeth to a party with me. So we made our way into Central London on crowded transport.  Elizabeth is very nervous of going out and has not once been out alone but that is because she has been imprisoned in hospitals for the past three years or so. It could have been much longer had I as Nearest Relative not succeeded in overturning the section 3. Under a section three this can be renewed time and time again and under the private sector there is no rush as they are getting paid a lot. Anyway the party was held in a very nice venue where you could have cocktails, take part in ten pin bowling and do karaoke. There were plenty of nice people at this party and some I know quite well through meetings I attend. We had our photos taken in a booth that gave spectacular backgrounds – it was really good and Elizabeth who was trying to make every excuse at the last minute of backing out of going to this party thoroughly enjoyed herself.

During the week Elizabeth has been in the company of her sister and they went to the cinema. Today a visit from the new social worker but I was at work and could not attend. I believe something is being arranged once a week so I have been told but nothing has yet been sorted out satisfactorily about the collection of the chemicals. It was much better before as I could collect them on a Saturday but when the new social worker offered to drop them round every week this reminded me of the Home Treatment Team in some ways. I have asked the consultant psychiatrist if it would be possible to reduce the drugs a bit as Elizabeth feels dizzy and I have been told by experts who really know the drugs like the back of their hands that 350mg is high and this could be why Elizabeth is showing signs of TD. Anyway the consultant psychiatrist has refused and whilst she says she will continue to monitor – how can this be when this consultant psychiatrist is no longer to be part of the team so I am aware. I am naturally disappointed in this and feel that the minimal drugs which I have been told is around 120-150mg would be best and the local MH team should be concerned about saving money in this area – this is an area where the local hospital has suffered with closures of essential services and this is where they could save money quite frankly – the less drugs the cheaper and also thought should be given by these professionals to my daughter’s long term physical health. However this is all too easily forgotten.

I also do not like integrated care as in the first instance the drug Clozapine was deprived for a long time when Elizabeth did not want to go back to the care home. If it was not for close friends of mine nothing would have been possible and I shall be forever grateful to them.

Thank goodness Elizabeth is not at the care home any more. When I saw the drugs I though Oh my God – all these drugs – it is no wonder there is no money for the NHS. No longer is Elizabeth on the Bisoprolol (probably given as an anti-anxioloytic rather than for heart condition) or the senna (often concomitantly prescribed with high doses of Clozapine – Page 222 BNF 60).- Most of all I did not like the Lorazepam as and when required. This is a highly addictive drug. When I telephoned the care home they said “we are not dealing with you any more Ms Bevis as Mr Bevis is next of kin” – apparently there was a poor signal in the room and that is why we could not get through on the telephone.

So plasma levels are OK at 0.45 so this is why a reduction will not be necessary according to the consultant psychiatrist. However I have been looking into things closely – Clozapine is contra indicated in heart disease – long term acute psychosis is often mistaken for conditions such as schizophrenia or bipolar. Elizabeth has a report to say PTSD which is highly accurate in the opinion of the entire family. However the team have dropped the condition of “treatment resistant” and despite all the research to do with PTSD the team do not accept this or the report from the independent psychiatrist who has 40 years experience. There seems to be a lot of disagreement and confusion within the team as to the correct diagnosis and I as a mother have found only one report to be highly accurate as I have the entire history of this case and that report states my daughter has PTSD. The Autoimmune function can be seriously disturbed by shock and many people who have been exposed to PTSD inducing experiences develop autoimmune disorders.  I am most concerned about this and I am concerned for everyone not just my daughter because I do not see that thorough assessments are carried out and drug after drug, sometimes several at the same time are given without proper investigation into metabolism.  Selyes General Adaptational Syndrome is an extreme example of PTSD caused by excessive stress response releasing glucocorticoid hormones which acts on the immune system.  This can affect white cell count and block lymphocytes in the thymus.  The thyumus shrinks in animals subjected to severe stress.   Anyway there is no single cause or ‘underlying factor’ for MH conditions – very complex dynamics involving  life experiences ’cause’ mental illness most probably in combination with some biological propensity to develop such illnesses. Once again I am thinking of drug metabolism P450s – psychopharmaceuticals inhibit some of the P450s,CYP2D6 in particular.   It is no wonder why Elizabeth did not respond to any of the drugs and I understand she has been offered ECT but refused this horrific and barbaric treatment. I now wish to know which hospital is responsible for offering this and I have my strong suspicions.  So it is all very well that the team have dropped “chronic treatment resistant” -  however what is Elizabeth doing on a last resort drug for those who are treatment resistant in that case as I have been reading some of the website of Novartis. If Elizabeth is no longer chronic treatment resistant all of a sudden she should not be on the last resort drug and therefore it should be investigated to see if Elizabeth can metabolize the drugs properly especially since Elizabeth is showing signs of physical illness and yet another drug had been offered by the consultant psychiatrist from Home Treatment Team  If any more drugs are suggested by the Neurologist I shall wish for the leading expert in metabolism to do proper tests first and in my opinion such tests should be widely available to everyone to ensure that they get the correct treatment and that will ultimately save money to the NHS if only things were done properly.   There has been so many drugs pushed at my daughter – enough is enough and now I just want the correct treatment to be given and no more experimentation. I have had two lots of tests done at the bio lab and it is not good when professionals do not acknowledge declining physical health shown therein. A young person like Elizabeth should be out enjoying herself and encouraged to do so but she is always tired, afraid to go out alone, disabled now after spending too much time in hospital. So in order to rectify this situation I am employing a personal trainer and this was discussed at the meeting with the social worker that maybe these sessions can be increased. Exercise and nutrition are the way forward and of course open dialogue. I am going to meet other mothers very soon in London who want Chy Sawel set up and who are attending the Bio Lab conference – it will be good to introduce Elizabeth to them all.

Anyway tonight has been shocking – there have been youths throwing fireworks everywhere, nearly setting cars alight. This is not such a great area to live any more. The Police said they had fireworks thrown at them – one of my neighbour’s cars got damaged. I went out in the street to witness all of this reckless behaviour. Anyway on Saturday I am taking Elizabeth to see an organised display that I have been to once before and am looking forward to this.

I had taken the time off from work today as there was a visit planned from the consultant psychiatrist and someone else from the Team.

The visit went much as planned.    The visit was to discuss an easier way around the problems of the drugs and Elizabeth is on a drug called Clozapine that requires close monitoring.  It is a drug that she was put on against her wishes in a hospital that she herself calls “Hell on Earth” situated in Beckenham Kent.  Elizabeth signed an Advanced Declaration before going in but that is not worth the paper it is written on.

Anyway getting back to the meeting – it was a meeting to discuss an easier way forward.     For the past 6 months I have had no help or support from anyone in the team.  I have had to rely on close friends and family and they have been brilliant.  I am only too aware that if I did not have so many good friends Elizabeth would have ended up back in the care home where she was no longer happy.

It is thanks to my friends she is still here as I work full time.    In some says it is a good thing that I work as it takes ages to get anything up and running under services and otherwise I could not provide anything. For instance when Elizabeth came home back in May I went immediately to see the Carers Centre but then they told me it would take six months when I recently enquired as to a certain scheme they had which worked well before.  I would rather know that Elizabeth is in good company whilst I am out at work to be honest but I am not biased towards people with mental health problems either as I regularly meet with those who have been through absolute hell.   I thoroughly admire them and these people although older than Elizabeth can offer the correct guidance as they have been on the wards and have been through hell themselves.  Peer support -  well I like this very much and wanted  an advocate who really understood what Elizabeth was going through – a former patient and this former patient who may well be looked down upon by certain professionals gave brilliant support to my daughter and wrote email after email in her support -  in turn I learned who was who.  I could not believe how many people were copied in to emails especially when you have an issue of complaint.   It is a waste of time writing but the best thing to do is attend the AGMs.  This way you can avoid correspondence that does not deal with your immediate complaint and is in effect totally ignored.

Emotion:

It is regarded as a sign of mental illness so I see it.

Example:

Symptoms:

Poor memory

Infantile/regressed

Not thinking straight

Losing things

Failing to complete College

Tired and lethargic

Poor motivation

People are against the person concerned

symptom:-…………………………an allegation of rape/abuse under a hospital by a member of staff! From what I have heard from others this can happen but it is all to easy to ignore such things.

Oh my God there are so many things.

The more I read the more I want to know more!

Mood:  -  Irritability – agitation, anxiety, perplexity incongruous affect, restlessness labile affect -

Lack of Insight – Denying she has any problems – not acknowledging risk of own behaviour

Constant symptoms mentioned – memory and agitation. rocking in her chair, touching her face and hair, though disorder.

CONCLUSION

THERE IS NOTHING WRONG WITH MY DAUGHTER – THAT IS BECAUSE SHE IS HAPPY TO BE AT HOME – MUCH HAS HAPPENED TO HER UNDER THE ROTTEN CARE SYSTEM. A SYSTEM THAT PROTECTS THE PROFESSIONALS TO THE HILT EVEN WHEN SOMETHING TERRIBLE HAPPENS AND SOMEONE IN THE FAMILY QUESTIONS THAT WITH EVIDENCE.

At the National Psychosis Unit they claim she was given a drug free period and that is not true. Mixing drugs together can cause a bad reaction to anyone.

THERE IS NOTHING WRONG WITH MY DAUGHTER.   Six months at home mixing in with people who do not have any MH problems and she behaves 100% normally.

She has lost her confidence and suffers from Agoraphobia to the point of feeling sick before going out.

I do not agree with personality disorder as the only time I saw this was on the drug Cipralix and this was ages ago now.

I  will always dispute the diagnosis of Schizophrenia as no bio marker has ever been found to prove it. Treatment resistant is poor or bad metabolizer and I would like to see tests done nationwide like in Liverpool.

Suddenly the diagnosis of “treatment resistant is dropped”

My daughter is happy at home and if more support was given to families then more families would be able to do what I have done.  It is a very sad situation when intervention by a team in a way I cannot document and all too commonplace can have detrimental effects on the family as a whole.  It is all about communication and how you go about the situation and  by threatening and bullying undermines everything.

Elizabeth has been at home now for 6 months .   “I’m so happy to be at home, Mum”.  I have introduced Elizabeth to many of my friends, some of whom she has known a long time and others who are new friends -  people I admire, those who have suffered abuse and trauma.  I like to call them “Survivors”.  Many people offered to help me when Elizabeth wanted to be at home again after three years of “care” that I would call “imprisonment”.   I would like to advise all mothers who think that the care is better elsewhere that unfortunately this is not the case and I naively thought care would be better under private sector -  well I was wrong there and I have previously documented about this private sector care.  However Elizabeth is on a lot less drugs than before although the Clozapine is too high and despite having previously 3 consultant psychiatrists under the Home Treatment Team noone has taken any notice of the fact that Elizabeth has stopped smoking.  I read a shocking article about someone who suffered from Clozapine poisoning -  well I am just a mother but I did not know about this -  I knew about the cessation of the chemicals but not about stopping smoking otherwise I would have brought this to the team’s attention and constantly reminded them.  With all the attention I have had recently from the Home Treatment Team I am sure I mentioned about her stopping smoking so I am amazed that this has not been dealt with before now.  At the care home lots of people were smoking and so was Elizabeth – now at home there is no need for this or the Lorazepam as and when required – or the Bisoprolol beta blocker.     I am delighted to tell everyone that today Elizabeth came out with me without the usual performance where she will physically make herself ill.  I put this down to one of my “carers”  – she has been round to the house whilst I was at work taking Elizabeth out for long walks and it has obviously done her a lot of good.    I cannot thank enough the many friends who have helped and supported me over the past months to enable Elizabeth’s return to home be possible.    All of my “carers” have remarked at what an improvement.   It makes me think that if someone from the mental health was placed within a suitable “family” environment that they themselves could get better rather than on an acute ward which should only be used short term. Anyway everyone should be treated individually.  Some may like the drugs and agree with labelling, others may not.  Some may prefer an acute ward – others may prefer a therapeutic community.  My point is there should be choice and there is not.  Elizabeth has been left long term on such wards and this is where the investment needs to be made in the community.    Something should be done about community care.  It is the system that is wrong and I can say exactly where the money is being wasted that should be spent on the NHS.   If private sector care is all about drugging too then this is no different.  Elizabeth was not given the choice of holistic care in Wales -  there needs to be choice and there is not choice in the UK as an acute ward and enforced drugging and labelling does not suit everyone.     The only way for a politician  really to determine what is needed is for that politician to spend a week on an acute ward -  I would like to see a politician do this and then do something about the situation.

Which Government cares about MH?.   Well I want to see proof -  a Government who cares would offer a room to discuss the way forward with mothers, fathers and patients and the way forward in my opinion is the example of Finland – a small area of Finland called Tornio where I want to take Elizabeth to see what humane care is on offer there and Open Dialogue. Anyway I believe action speaks louder than words and am fed up with hearing comments and no action.

Today we have met with the group of survivors who have been helpful to Elizabeth – tomorrow Elizabeth can visit her grandmother  in hospital.   Both grandparents are in hospital right now and at least she is nearby.

I am going to take Elizabeth to see a fireworks display soon and unlike last year I am looking forward to Xmas.  Times like this have been a problem when someone is hundreds of miles away and a good part of that time is spent in travelling there and back.

I have had some good news today and am so happy.  I am even more happy to see the progress of my daughter who I want to see live an independent life one day and in order to regain her confidence I have appointed a personal trainer to come to the house during the week.

There are many stigma campaigns but I believe the way forward is integration and not just encouraging someone to mix in with people who have mental health problems but society as a whole as there is much ignorance.  The press do not report things correctly and I would welcome anyone to meet me and to see for themselves what is really going on -  I would welcome trainee nursing or psychology students to be involved as I think what better training could they have but to see the full picture and  you can only do that if you personally get to know the family.   “She will be happier with her own kind” – these are words  from a professional.  Away from MH environment it is important to note that Elizabeth  has shown nothing but normal behaviour and I as a mother  have read u p on the causes of psychosis and everything I have seen has been the result of the mind altering drugs.  It is no wonder why this is the case as Elizabeth is “.chronic  treatment resistant” which means poor metabolizer and I want something done about this situation and proper assessments given.  I do not want any more of these chemicals given without proper tests done and these are being conducted in Liverpool and should be conducted nationwide .  When I enquired about these tests locally I was shocked that GPs and consultant appeared not to have any knowledge about these tests.  Anyway if I have to go to Liverpool again I was most impressed with the professionals I met  at the INTAR Conference and the social workers there who want to see positive change.  When I last enquired the Professor was out of the country and I hope is back now.    The|  Neurologist appointment has been made but before any drugs are given I  need to check with the Professor from Liverpool as Elizabeth is a poor or non metabolizer and I need the most up to date information first and when there are so many different diagnoses in the files I need accuracy as if the wrong diagnosis and wrong treatment is given this could do more harm than good.  I want the P450 liver enzyme test done and to know that my daughter is getting the correct treatment after so many different diagnoses and drugs that do not work.

Yesterday I decided to take Elizabeth to the Chocolate Show held at the Olympia Exhibition Centre.   I was already in this area first thing in the morning and had to go back to collect Elizabeth for this show.

“I liked the fashion show very much and watching the demonstrations.  We then went to a tasting event held by Hotel Chocolate which I enjoyed.”

It was great to show Elizabeth around the surrounding area that I know so well as I spend so much time there.

Today we have been up very early to go to the gym for a class.  In the afternoon we had a visit from a personal trainer I have appointed to come to the house.  Although I have joined Elizabeth in local gyms, she does not get use out of them so having a trainer to come to the house will be a very good thing.

I have hardly been at home this weekend as we have been out most of the time but I would like Elizabeth to regain her confidence and independence and there is only so much I can do but I am very pleased that Elizabeth has not got to the stage where she completely refuses to go out at all.

With nothing being provided it is left to me to try and provide things to do while I am at work and at the weekends I take Elizabeth out places.  She thoroughly enjoyed the Chocolate Show and the costumes were fantastic.

I am hoping that the new trainer will help Elizabeth so that she can come away with me -  I would like to take her to Finland to see for myself the wonderful care on offer in Tornio.

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