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Monthly Archives: September 2015

When Elizabeth was sent to the Bethlem and signed an Advanced Declaration (not worth the paper it was written on) meant to be a drug free period of assessment but in fact led to her being put on Clozapine against her wishes I was told “you should have done your research – its all about Clozapine here” .  I made sure that staff were aware of the fact that Professor Robin Murray promised a drug free period of assessment.  Mixing high quantities of drugs – Olanzapine with Quetiapine led to adverse behaviour and distressed phone calls from Elizabeth to me in a confused and terrified state “I don’t know which tablet to take, Mum”   I will never forget that place and how they treated people and on the surface it looks good however if you disagree or dare to challenge them you get treated in the most shocking manner.

Under the site Patient Opinion there are some comments that are very accurate in terms of describing mental health care and you think you are getting better under the private sector but NO!  –  there is a reluctance to let go and no wonder why when so much money is being spent by the local NHS on such services.   For instance there is meant to be a Hospital Manager’s Meeting before a Tribunal and they played on confidentiality and in desperation refused files to my solicitors.   So the Manager’s Hearing did not go ahead.    The Consultant Psychiatrist at the private establishment was soon to leave and this is common place I have noticed if there is an ongoing investigation or a complaint – someone has left and that makes access to information or responses difficult or impossible.

Anyway, I have tonight I decided to look up the two hospitals where Elizabeth was being referred – all is to be seen via the patient opinion site where you are more likely to get an honest write up than when you look at the ratings of the CQC where practically everything is rated  good/excellent and I recently questioned them openly on Twitter – how can an establishment be good when a resident who has just come out from hospital has no food at the weekend and that is because she cannot manage money –  when someone is drugged to the hilt and left without proper care and support then it is not very good that this resident is left without any food and there is no attempt to contact the relatives.  When £1750+ per week is being received by the care home there is NO EXCUSE.  I am waiting to hear the rest of the answers to my complaint and it has been suggested that I write to someone who has since left –  well this may involve a bit of investigation on my part but I have been recently very good at tracing certain professionals  through their professional representative body.  I am now awaiting responses.

I now wish to share with you the following and this sums up treatment to many people detained under MH shocking care of the UK.   where breach of human rights is commonplace.   Only a few places that breach human rights and treat vulnerable people cruelly are reported in the national press and I would like to feature such hospitals on my website in order that improvements can be made.

The following comments are not written by me but by service users/carers and I can fully identify with them.   There are two separate hospitals featured below:

PATIENT OPINION   https://www.patientopinion.org.uk/

“I had to go there because my relative had a tribunal. This security precautions are worthy of a prison, very depressing, even the judge said that sometimes in these places, she cannot do her work because they take her laptop from her. I nearly had an argument with the people who removed all my possessions as I went in. The actual staff on the ward were very nice, I think it is just the regulations, so restricting they cannot possibly be conducive to recovery. My relative has completely withdrawn, I feel that the psychiatric system itself is wrong, has made his condition worse. Always presupposing the worst, more likely to get it. My relative is stuck in there, unable to go out unable to draw out any money, begging me for money, which I can’t afford. Supposed to be rehabilitation but the people aren’t even allowed to go online//have a mobile phone or tablet. Maybe they have some real hard cases in there, for whom these restrictions are designed, but my relative is not a criminal or dangerous has the misfortune to be banged up with those who might be. The grounds etc all very nice but apparently nobody is allowed out in them. I would not like to work in that place, or to be in there. Ward staff as I said, doing their best, and in spite of everything managed to remain cheerful and positive.”

*************************************************************************************************************************************************

“Family experince of a loved one’s stay

Posted by Anonymous 4 months ago

My relative was placed there by the NHS and due to logistics we would not have been able to visit him for two weeks. Luckily he was transferred to the local hospital on day 14. I found the staff rude all save two I’d spoke to. Trying to speak to him on the phone was a nightmare – calls are transferred to a mobile which due to unit’s location, kept cutting out. Despite being his next of kin and his consent to share , I was not called once by them. I had to request feedback and asked his doctor to call me. I then had a convoluted journey obtaining an email address to send a copy of his suicide letter to – it had to go via a nurse who failed to confirm receipt as requested. I had to call and ask if it had been passed .He was placed on a cocktail of meds which as since been reviewed at the new placement – two meds have been stopped and it was not clear why he’d been put on them. My impression is that no matter how lovely the setting and good the food , the staff and service were indifferent. in their treatment of family members at a very distressing.”

“An atmosphere of fear and anxiety instead of…”

Posted by Anonymous 13 months ago

Rather than an expected atmosphere of compassion, …………….seems to prefer a climate of anxiety and fear to keep patients quiet, with numerous posters and occasional verbal warnings reminding patients that they can be forcebly sedated for any reason (such as voicing a dissenting opinion or daring to question a staff member). Presumably a lack of funding also means limited staff, and as such care is inconsistent (entire areas including patients own rooms are at times off limits). Simple requests for belongings are met with scorn, and staff are seemingly not above false accusations to justify sanctions over perceived slights. Moreover, and most alarmingly, self destructive or otherwise anxious behaviours are either ignored or afforded the same “sedate and forget” treatment as mentioned above. Patients are often handed medications without information or consultation also

Posted by ………….11 months ago

“I have to agree with a previous reviewer’s comments on how dreadfully poor standards are in this facility. There is little compassion and an atmosphere of indifference and tension. Personal belongings were confiscated and “checked” in absentia. I was denied access to a Laptop, iPad and mobile phone even though a consultant agreed to my request. When I commented that the book I was reading was on my iPad, a health care assistant showed me to a library of approximately seven, dated readers digest books. I also have to agree with a previous reviewer in regard to false accusations and scorn for simple requests for belongings. I asked for my notepad and pens and did not get them for three days. I asked for my electric toothbrush (no charger allowed), own soap and toiletries and was denied them for the same amount of time. The chief architect of this archaic, inconsistent and dictatorial high- handed behavior was the office manager, a woman who apparently is feared by other administration staff and nurses alike. This hospital prides itself on its grounds, but access was denied to too few periods during the day and only to a restricted area for smokers, presumably because of staffing shortages. These shortages were particularly noticeable due to frequent requests over the internal mobile radio for staff to relieve other staff for breaks. Forget dignity for patients, this place would not seem out of place in a Dickensian novel. When staff say they will come back to you with an answer for a simple request, they do not. That is one of the two consistent poor behaviors experienced by me in this awful place. The other was waiting patiently for medication at the cupboard they call the clinic. I once waited for over twenty minutes without being acknowledged. Additionally, I was not weighed, my temperature was not taken, and my bp was not measured once during my stay. On another occasion, whilst waiting of an apparent lifetime for medication again, the duty doctor was openly raising his voice to the duty nurse about not being able to admit another patient because another patient had not been “booked” off the system. Staff at this hospital should realize that people with mental issues do not necessarily have feeble brains and should respect the confidentiality of patients in discussions. In all, the NHS had appallingly value for money for my stay.”

posted by Your name or screen name 4 years ago

“What I liked

Nothing

What could be improved

Everything

Anything else?

No”

WELL SAID – THE FORMER PATIENTS I HAVE MET AND SPOKEN WITH ON THE WARDS ARE HIGHLY INTELLIGENT AND THEY DESERVE DIGNITY AND RESPECT.    IT IS NOT JUST PATIENTS WHO GET TREATED APALLINGLY BUT FAMILIES TOO.  

If only there was Open Dialogue.   An end should also be brought to “internal” investigations done by the very staff who are being complained about – one such member of staff was appointed to do an investigation into my valid complaint when the drugs were denied to Elizabeth for four days putting her life at risk.  She then passes my complaint to the very department to whom the complaint was addressed.  This same woman recommended the above hospitals.

I was showing Elizabeth tonight where they were planning to send her.   Thank God she is now at home and away from such cruelty however I would like to help those who are presently wrongly incarcerated (it is important to note that hospitals like to hang on to patients as they are earning thousands of pounds a week and are in no hurray to see them go)  the patient is left to go downhill and leave and family contact discouraged. This week I am joining the wonderful Organisation Liberty and I am more than happy to help in any way I can and I wish to draw they attention to some of the most shocking cases of abuse under the mental health care system of the UK.

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I am proud to have been able to take part in the wonderful event of the CEP (Council for Evidence Based Psychiatry).  I would very much praise this organisation and the wonderful speakers.   I have discussed  with Elizabeth and she agrees that it is so important to make everything public in order that improvements can be made.  Nothing is ever going to be achieved by sience that is for sure.  I have just posted the link to Mr Hunt and Mr Corbyn as I do not want them to miss out on this wonderful debate.  I am so glad I went to this event and offered my assistance along with Elizabeth and her sister who makes diagnosis look ridiculous”!

Just to update you re Elizabeth:

Elizabeth was up early on the morning of the CEPs conference. We stayed overnight at a hotel called The Lodge Hotel which was really nice.  Elizabeth does not feel her best in the morning due to the mind altering chemical Clozapine.  However Elizabeth knows how important it is to attend such a wonderful event – nothing can make Elizabeth do what she does not want to and I as a mother am delighted that she can enjoy and see the value of such an event and has learned a great deal snce coming home to the right environment. Sandra of Chy Sawel stayed with me and this is the very care I would like to see in the UK.  CHY SAWEL  At least Elizabeth is not in an oppressive, coercive environment and one where a resident is given  £30 a week to manage on and expected to get on with it regardless.  I am not happy about this as no way is this the correct way to provide care.   The attitude of professionals to  – let a patient run out of money/clothes for not doing washing up. Well –  what I want to know is how on earth do professionals realise the full effects of being on maximum dosage of Quetiapine 800mg+ other chemicals.   Now I can see the truth.  What kind of doctors ignore the physical health of a patient or resident in a home?

I am described in the files an “over-protective mother” who is overbearing etc etc.  No last night Elizabeth was out – out at a wonderful venue and  not with me either in a wonderful place called China Life, having her hair done in London and going to an infra red sauna.   I am not a parent who wishes to restrict Elizabeth and not encourage her to go out on her own.  Where do these professionals get their information from!  They certainly do not know the family. I would in fact want to see Elizabeth completely independent..

So Elizabeth had a nice day out and was out late last night with with a friend of the family who is an expert on nutrition –  I am trying to encourage  Elizabeth to be independent and to manage her finances and live a healthy lifestyle.  I now have every hope for her .

http://chinalifeweb.com/tea-bar/

I will write more at the weekend.  I wish to feature the wonderful organisation Liberty.  I hope to join this organisation.  I am very keen to help in any way I can to improve things and eradicate the abuse going on today in the UK.

As promised, I now write my account of the recent meeting that I attended at my local Council.   This was the first meeting I have ever attended and it was held mid-week at 7.00 pm.  Attending were more than one local Councillor (c6 of them, I have just counted).   Also  invited to attend  were Church of England Diocese  Representative as well as Catholic Diocese Representative, a Parent Governor Representative, one Scrutiny Officer and one Scrutiny Manager.

Agenda:

This included:

Welcome and Apologies;

Declaration of interest;

Exclusion of Press and Public;

Call in of Report on Co-mingled dry recycling, Mixed Organic Wastes, Food Waste and Garden Waste – recommendation for contract award;

Looked After Children (Reports to be heard from Head of Services concerned);

Better Care Fund (Report to be heard from  BCF Programme Manager);

Care Act 2014: – 6 month update (Report to be heard from Acting Director of Health, Housing and Adult Social Care);

Residents Priority Fund Evaluation (Report to be heard from Head of Performance Management);

Work Programme 15/15;

Minutes of Meeting last held;

Matters Referred from the Exec. Council to Scrutiny. – How they should be progressed;

References to Cabinet;

References From Scrutiny to Cabinet/Council and other bodies: monitoring update;

Dates of Future Meetings; 

The Attendees of the meeting sat in the centre of the room, whilst I took my seat alone on the rows of empty seats to one side.   Because I was the only member of the public who attended, I was invited to sit at the end of the table with everyone else which I did but I was not formally introduced to anyone but I could see some of the names on name plates around the table.   No sooner had I taken my seat in the public area on arrival I was asked to leave and I was puzzled as to why-  if this is a Scrutiny Meeting then noone should be asked to leave and everything should be open and transparent.    I was not the only one asked to leave for the first half an hour of the meeting and whilst I sat in a waiting area I was talking to two people (council employees) who I did not know personally but later found out they were Heads of the  “Looked After Children” team, so I believe.  We waited until the councillors and everyone had finished their private discussions before we were called into the meeting.   I thought it was good to be invited to sit round the table with all of them but I sat there quietly throughout and did not comment and only on one occasion, was I asked who I was and I just said “a mother” .  I was also asked what I thought of the meeting and I said that I found it interesting and informative. However, I had also voiced my opinion earlier on to the other attendees (also excluded) for the first part that I thought it was  wrong to have a scrutiny meeting- any part of it in secret.

Of course, my main interest is in care and it was interesting to hear what the Committee members had to say and listen to the presentation of their reports.

Figures of  how many children in care were presented and from the information supplied, figures would suggest growth  over the last year relating to young people aged 15 +  for reasons such as:   “chaotic home situations” or through criminal justice process maintaining them in stable placements and engaging them in education which was stated to be a significant challenge for the services.    Comparison was made to a other local Boroughs and of course the comparison came out very well in the Council’s favour by stating lower numbers..  Apparently,  the majority of children in care were in foster care.

The reasons children became looked after were given as “not safe to remain in the care of their families;  when families refuse to continue to care for them; unaccompanied asylum seeking children; remanded through criminal courts.    Various charts highlighted different matters, including ethnicity of looked after children,placement types- YOI /prison, semi-independent, secure unit, residential school, placed with parents, other LA /Foster Placement , Mother & baby unit, In-house Fostering, Hospital, Family & Friends , Children’s Home, Agency Fostering, Pre- Adoptive.  The chart gives you all the applicable figures of how many placements in each category.   There was also comparative figures from years 2010/11 to present in the local Borough, inner London, outer London and national numbers percentages per 10,000 children aged under 18 years.  Another chart gave details on age starting care.  Apparently Benchmarking data is used to compare performance of local authorities on their work with looked after children and this is available at national, regional and statistical neighbour levels.  My local area looks as though it is the best on this chart with the lowest percentage!  “Maintaining children in safe, stable placements has been shown to be a key factor in improving their long term outcomes.  The placement stability of looked after children is closely monitored by the DfE through two specific measures.  The first counts the percentage of children who have experienced three or more placement moves in a rolling year.”   More charts are provided giving figures on stability of placement (length of placement) in the local area and other councils and nationally.   Every school child in care must have a Personal Education Plan (PEP)  For young people age 16 and above the PEP is incorporated into a Pathway Plan.    Yet another chart on Percentage of care leavers in education, employment or training in the year 2013/14.  I could go on and on about these charts as there are so many to feature but I noted my local area come out quite high on adoption levels compared to other boroughs.  Under Issues/Challenges are mentioned the costs of caring for the growing number of looked after children which are increasing at a time when budgets are facing unprecedented pressure.      How very interesting from my point of view.  “Following the Government’s focus on encouraging more potential adopters to come forward there are now far more adopters available than children waiting for placements.”   There is a proposed move to a regional approach for adoption and this is under active discussion to determine the most appropriate model for London.

The meeting then went on to discuss the BCF Overview and 6 Month Progress Report:

A new integration Board established and working well!

Good progress being made on developing shared care record across social care, GPs and hospitals.

Many other thing are listed and claims of progress being strong are made and towards targets.

Many other things are listed and recommendations given.

Apparently in 2013 the Government announced the creation of a new Better Care Fund from April 2015.  This was designed to accelerate development of integration of Health and Social Care Services by shifting money from health into pooled budget with social care.  “Intention to focus on efforts on preventative and rehabilitative services so that interventions could be made “upstream” to lessen impacts “downstream””   The figures given for my local area are over £20m.   There is explanation of how this figure is made up.  Very interesting, especially how this figure is made up.

How the Fund will be Spent:

This gives the figures for protecting adult social care, for providing more integrated care, for a contingency fund against reduction of non-elective admissions and this is held by the CCG in accordance with national guidance .  Then there is the figure given for Disabilities Facilities Grant requests.   The BCF investments are focussed on :

Integrated care for older people

Adults with mental ill health

Adults with long term conditions

Children/health and wellbeing.

Target outcomes from work streams :this goes into several areas – I think the most applicable to Elizabeth would be “reducing admissions to nursing or residential care services and improving patient and service user experience of services.   I could say plenty on these points from my own personal experience.

Then there is under heading of Update how excellent and highly recognised at national level the local area was in performance re this scheme.

There is so much information on this that I will be all day typing this but it goes into Next Steps, Performance Issues, Reduction of Non-Elective Admissions, reductions in delayed transfer of care   – just skimmed through this and nothing really applies to Elizabeth as she is not under care thank goodness.   However, it then goes on to talk about Enablement Services and this is something that Elizabeth has not wanted anything to do with and especially since all that has happened.  “To embed the use of “trusted assessor capacity” in order to make assistive technology a key part of the enablement offer”.   As Dr Johnson would say “Truth Trust and Consent” –  We were taken to court, bullied, harassed and serious allegations have been made about “someone?” that the Director of Psychosis recommends files not to be released.  This was around the time they were trying to force return her back into care.  When the most nasty comments are said behind your backs, not only about me but my carers too and the threat of a CTO being planned behind your back, severance of contact with family and deprival of liberty how can someone be expected to trust and work together with  professionals who have on their agenda to take you to court time and time again?      I as a mother have been accused of standing in the way /interfering with “care” however I have left every message on my answerphone for Elizabeth to contact various people if she so wishes and she has made it clear she does not wish to go to another area for their clinic and what is more it would appear we were being recorded last time on someone’s phone.  I completely understand how she feels and my carers feel the same way too.  If only there were such a thing as Open Diaglogue but there is nothing like this in my local area and allegations made can be so serious that they cannot be dismissed by carers and all of this has affected working relationship with the team.    Now that Elizabeth is no longer in a care home hundreds of miles away from home I have evidence of not only how well she is doing at home but as to how someone vulnerable was not being properly supported as far as money is concerned whilst in care.    An allowance of £30 a week is apparently was given at the care home and this is supposed to cover all food etc for the week and if that allowance is overspent then that resident goes without food at the weekends.  This sounds very unsatisfactory to me.   I agree that residents should be encouraged to budget but someone who has been in hospital along time needs a lot of support.    This has happened to Elizabeth as I can see and  I do not know how many times that this occurred but no attempt was made to contact anyone in the family to provide extra funding.  Besides the team would have no idea of what it is like to be on high quantities of mind altering drugs which impair thinking ability at times.   When so much money is being spent on such “supportive care” in terms of care homes then there should not be any instances where residents go without food at weekends.  Elizabeth was going downhill yet was being pushed to go back to this care home and I would like to know how much extra funding it cost for a CTO to be arranged.  No wonder the consultant psychiatrist was “happy” to manage Elizabeth on a CTO –  I would like to hear how much is spent on this.   It should never have arisen that a vulnerable patient like Elizabeth who had been stuck in care for three years should be allowed to go without any food ever!.

The local Council go on to mention Dementia and this is something else I have had experience with regarding my father who had Alzheimers and who I kept out of a care home for man years and whom is no longer alive.  I had 24 hr care in place with my father paying for parts of his care and Direct Payments so that I could provide carers and this arrangement worked so well for numerous years.   There was a brilliant team involved.  Crossroads, Age Concern, a private agency, my own carers and Day Centre but transport.  It took up a lot of my time caring for my father and this meant I could not have holidays etc.  I was pleased that I kept my father out of going into a care home.   I am not allowed to speak of what happened to him but he died aged 90 but had to undergo a hip operation.   My father had two brilliant social workers who worked with the family extremely well.   I wish I could say that about Elizabeth.

Next was discussed Overview and Scrutiny Committee (OSC)  – reporting on the Care Act 2014.

Briefly the local Council received a report in Feb 2015 setting out key requirements of the Care Act 2014.  The Care Act summarised “general duty on local authorities to promote ‘individuals’ wellbeing and the intentions of the Act to rebalance adult social care towards prevention, wellbeing and independence.”  So they are accumulating data about costs of care in care homes and comparative figures with other London Boroughs.  In relation to impact of funding reforms and introduction of individual personal budgets IPBs which at the time of Feb 0SC meeting were due to be introduced in 2016 but now postponed by 4 yrs.   Well that is very interesting!

Care Act funding reforms include cap on costs of care due to come into force in April 2016 but Gov announced recently delayed until April 2020.  The reason for this delay will allow time to be taken to ensure everyone is ready to introduce the new system and look at what more can be done to support people with costs of care.  The announcement was made by letter from the Care and Support Minister Alistair Burt to the Chair of the London Government Association (LGA).   There are so many other points listed but applicable to Elizabeth is Point 4.,3 Local Authorities must promote wellbeing when carrying out any of their care and support functions in respect of a person  This is sometimes referred to as the “wellbeing principle” because it is a guiding principle that puts wellbeing at the heart of care and support.  Wellbeing is a broad concept and is described in the Act as relating to the following areas:

Personal dignity    –    What is personal dignity when a drug such as Clozapine is deprived for nearly four days etc.   What  is personal dignity when no one bothered in the first instance when Elizabeth decided to come home, apart from making every attempt to destroy the family and force return her back into care.

Physical and mental health and emotional well being  “I wish they would leave me alone, Mum – when is all this going to end” – Elizabeth’s comments when we were being taken to court and regarded as a ‘special case’“.

Protection from abuse and neglect –  at least at home Elizabeth does not go without food.  She is being encouraged to be independent and is no longer treated as a ‘prisoner’.  At least she is not in a coercive environment being forced to choose between Mum and Dad and can see the rest of the family whenever she wants.

Control by individual over day to day life –  at least Elizabeth is not being written about in a nasty way any more.  I am trying to provide things that encourage her to go out bearing in mind her Agoraphobia which she has developed since being wrongly incarcerated for several years.  I am trying to help Elizabeth become independent with her money too but am giving a bit more than just £30 per week, encouraging Elizabeth to make shopping lists etc and today Elizabeth was handed her bank card to do her shopping and was encouraged to walk halfway up the road which she did on her own although every so often Elizabeth had to grab the walls as she feels dizzy.

Participation in work, education, training or recreation.    As Eliizabeth is on a “high level” of Clozapine she is very limited to what she can do.  She feels dizzy as though she is going to fall – even on taking her to the zumba classes she has to stand close to the wall .  Socially  she is doing well away from MH care as she is mixing in with people who are either ‘surviviors’ or people unaffected with MH issues.  Although she has lost tremendous confidence she is making every effort to go out socialising and taking part in conferences and organisations such as ISPS and their workshops.   If the drugs were reduced. then that would be good but in my area they drug people at high levels so I have seen in the files and ignore the patient when that patient requests to be reduced.  They could save money if they gave less drugs and especially if they offered the tests that I have had to turn to Holland for.

Social and economic wellbeing – at home Elizabeth does not go without and valuable things do not go missing.  Socially Elizabeth is benefitting by going to lots of different events and being with her family at home and seeing her cat on a day to day basis.

Suitability of living accommodation.   Elizabeth has her own room, surrounded by her possessions and she an come and go as she pleases as she has a key and is not restricted and treated with dignity but at the same time is encouraged to clean and do her own chores and now I am hoping to help her on money and managing it as well as the internet .   Therefore it is very suitable to be home .

The individual’s contribution to society –   by having Eliizabeth home I am saving £60000 in care home fees whilst nothing whatsoever is provided but Elizabeth is on last resort drug Clozapine which renders her disabled.  Elizabeth does not want to see certain people and neither do my carers.  This is for very good reasons.   There are no facilities where someone can go in to be reduced from these drugs and once someone is given a label by a consultant psychiatrist that label sticks for life unless you can prove there is a physical illness. This is why I hope Chy Sawel can be set up looking  properly at nutrition and minimal drugs unlike current care on many acute wards.   I would love Elizabeth to one day have a job but right now and having been in care for c three years she struggles to do some essential and basic chores such as washing up and cleaning effectively, throwing away rubbish etc – she is too afraid to even go out however she is really trying and does not refuse to tidy up, do washing, ironing and household chores.  She is no longer in bed at 6.00 pm which is good.  The best thing I have come across  is direct payments but this has never been given to Elizabeth and if this was to be given I would be able to provide a therapist to work on Elizabeth’s ability to go out alone but in my local area families are excluded and confidentiality played upon so if for instance there are for example any appointments Elizabeth may have been advised of ,  if family are not advised then things can be overlooked and Elizabeth would need help in getting there at the moment.  You are treated like you are invisible as a parent apart from when a team want to get rid of you by way of court and then you are regarded as “special”.    I felt like speaking about Open Dialogue at this Scrutiny Meeting as this would I think bring about massive improvements.   I am doubtful this would be considered in my local area especially if meetings such as this are held in secret and this goes against the wonderful idea of Open Dialogue as this is all about openness, honesty and trust as well as inclusion..  There are plenty of organisations giving advice and information but in reality  it comes down to money  this is not always being given to provide for those who are vulnerable and there is blatent discrimination in some cases especially when someone disagrees about care and diagnosis.   Instead funding is being spent on in-house services, private sector care, incarceration and court of course whereas it should be spent on providing those with MH problems to be integrated into society with the right level of support.  A social worker once said “Elizabeth will be happier with her own kind”.    How very wrong this social worker is with her comments.  I have proven otherwise and comments like this make you wonder how some professionals can even comment on what is the best interest for someone.

Mention is made of carers assessments and I have not had one.   I have seen much discrimination and undignified treatment in my local area concerning Elizabeth and despite all reservations by certain team members after, 1 year and  three months since Elizabeth has come home everything has worked wonderfully.   Having been taken to court so many times results in you just wanting to stay clear of such people who have their own agenda and think they know the family but they do not.  You do not know what they are saying about you –  they might be nice to your face but behind your back are saying the most nasty things and everything is being recorded and now I have obtained all of this.  This is why I would like to see Open Dialogue as you can trust professionals this way and this is why I like the ISPS organisation as service users and carers are treated with dignity and professionals who really care attend such conferences.  In Tornio, Finland MH patients are treated with dignity and respect unlike in the UK and the UK should stop wasting time in presenting all these figures and provide what is needed open transparent care that provides dignity and honesty and inclusion to parents/service users alike.

As for Safeguarding Adults – not one incident at home unlike whilst under care as I can see.

Anyway, I was amazed that I was the only one present at this meeting from the public and I think more people should attend such meetings and take an interest in what is going on.  I do not think Elizabeth would have enjoyed sitting around for 2 and a half hrs but feel like bringing her to a future meeting (part of) so that everyone can scrutinise how well she is doing at home and look towards saving money by not spending it on expensive court actions.  They also need to look at equality and discrimination and I see this being a major problem in my area.  So I presented my local Councillor with my story called “Get Her Back We are Paying for That”.   She was unable to answer me when I asked how comes no one intervened as deprived the chemical Clozapine leaving Elizabeth without this chemical for 4 days.  The main excuse to get rid of me is my views on the chemicals but as far as I am concerned I have the best interests as all I would like to see is the minimal level of drugs, bearing in mind physical health.  So the team are in favour of the drugging of Elizabeth with this chemical for life but they do not stop to consider physical health and this is where I as a mother have had to go to the very top and contact those who fully know the workings of the drugs and this has taken me beyond the UK to Holland.  How wrong they were to assume that I would just stop giving this chemical just because of my own views even though my views happen to be correct.   In fact it was certain team members who were responsible for depriving this drug as they made it impossible to get it anywhere in the local area forcing me to have to go to Harley Street and beyond.  I told the Scrutiny Committee at the end of the meeting that I had to turn to Holland for help for accurate treatment and that no one will be able to argue with such accurate results and how these results could benefit everyone and should be adopted by the NHS so that everyone can benefit by being on the lowest possible dosage and assessing for adverse drug reactions before giving the treatment on a trial and error basis.   I am still waiting for these results in full but I am delighted to hear from the Professor as I expected that Elizabeth is unable to metabolize some anti-depressants.  This proves my point.  Bearing in mind the first chemical given was Prozac this puts into question the diagnosis and treatment as consultant psychiatrists should not just jump to conclusions without proper evidence based data and  I hope to present the full facts to the Scrutiny panel at a future meeting – that is if they have not banned the public altogether by that time.

Anyway, now turning to my week.   I had an accident on Monday that left me lying in the road – a hit and run driver who lost her wing mirror.  Had it been the car itself that hit me I may not be around today however I was not going to miss the Liberty Awards for anything and I refused to go to hospital.  I would praise some bystanders, complete strangers who stepped in to help me , the police and ambulance services were brilliant.   I will write about the Liberty awards next time.

Yesterday I took Elizabeth out with me all day.   Together we took part in the Contour Makeup Artist Course and afterwards ”  I wanted to go out somewhere nice.    I took Elizabeth to a wonderful pub in Fulham for lunch and then onto a show – we saw the fabulous show Memphis which I would highly recommend Today I have plenty to catch up on so this blog is being done very quickly so I apologise for any spelling mistakes however the facts and information are 100% correct.  I would also state that I have been looking at “Open House”  I have probably left it too late to book for some buildings as this is due to take place next weekend.   I would not mind going to Downing Street but most importantly I would like to meet Mr Cameron and Mr Hunt –  there is much to be discussed as far as mental health care goes and I would like to see choice in care being given and facilities to properly assess and check for underlying physical illness and to be reduced off these mind altering drugs especially when diagnosis and treatment is in question in terms of ‘treatment resistance’ – POOR OR NON METABOLISER. Look at what money could be saved by giving less drugs (minimal levels) and proper tests like I am having done in Holland and as already said these tests should be available to everyone in my opinion.  I would also like to speak to them about the  court system and the way vulnerable people are not being treated fairly and not forgetting those who are given up on – those who are incarcerated for many years and deprived of their human rights to see their family and visit home.  I know many cases such as this and this is costing the taxpayer a fortune.  It would be cheaper to give direct payments to their families and work together using the open dialogue method.

Last of all I am looking forward to attending the conference MORE HARM THAN GOOD at Roehampton University – looking forward to meeting everyone and taking Elizabeth along to this.

My next blog will be about the Liberty Awards and  this wonderful conference.

Elizabeth has been at home now for one year and three months without any problem whatsoever.

We have had to rely on close friends and family to help us since she came home from the care home.   Without the help of the close friends and close family none of this would be possible and I rely on such help as blood tests have to be carried out, chemicals collected and blood packs collected from another location in another area.

During the titration of Clozapine close friends remained with Elizabeth all day whilst the team would come in twice a day and were supplying their reports back to social services as we were once regarded as a special case for court.  We have had problems with the supply of these drugs before on more than one occasion.  During the titration there was one instance where nurses tried to take away the chemical Clozapine and tried to revert to twice daily visits rather than once a day as had been requested by both Elizabeth and carers.  The team tried to take back the drugs  to resume twice daily visits at my home as they were ordered to and they were asking very intrusive questions so it was quite obvious what was going on and now I have the files to prove this.  Another occasion carers were turned away from a local clinic and were told to go to the neighbouring Borough to this Wellbeing Clinic where Elizabeth has made it clear to everyone she does not wish to attend and this is where social services are based. On the one occasion Elizabeth attended this clinic it was obvious we were being recorded on one of the nurses mobile phones and apparently there was a problem with this recording and I commented only to be told this was normal practise.  Well I do not see this as good practise at all.

This is what my carer was faced with this week when calling to collect the drugs from the local hospital:

At pharmacy carer was told “Haven’t you been told you now collect the drugs where you have the blood test done?”  No we knew nothing about any change in arrangements as this arrangement had been going on for a long time without any problems.

My carer then went to the reception of the blood test department and my carer said the following “I have come to collect the drugs for Elizabeth and I understand the drugs are now delivered here”

The Blood Test Unit then said “Oh no we do not get the drugs here”

My carer said “The pharmacy told me they are here for collection

Blood Test Unit “No we do not have any drugs here

My carer then went back to the pharmacy  and spoke to the pharmacist and said “the drugs are not here

Pharmacist said “where do you have the blood tests done

Carer – “at this hospital

Pharmacist:  “They are not here but they are at a clinic called Wellbeing” (this clinic is a long distance away and in another area – this is the clinic that Elizabeth does not wish to attend”

Carer “I am not going there and can only collect on Saturday

Pharmacist “Oh I will get the drugs back then for you to collect on Saturday morning and the Pharmacy is open on Saturday morning”.

The Wellbeing Clinic is where social services are based.    Elizabeth has already said she does not wish to go there – we were being recorded and this is not right.   The clinic is situated a long distance from home in an area that does not hold good memories for Elizabeth in any case and Elizabeth was not keen to attend on that one occasion but we were put in a position of no choice as we were turned away from the pharmacy at the local hospital.    It is more awkward for my carers to attend all this distance and I can quite understand why no one wants to go there as there is an investigation going on re missing files on serious allegations and “good plans” between social services and care home.

I am happy I attended  the Council’s Scrutiny Meeting where I was the only member of the public present.  I was told to leave at first so that the Scrutiny meeting could be conducted in secret –   I had to sit out for the first half an hour.

Anyway I wrote to the local councillor I met at this Scrutiny Meeting about the problems we have encountered in picking up the chemicals.  She has written back to me to say that this was due to an administrative error.  I have written to say that my carers have to go to both hospital and neighbouring Borough to collect the blood packs separately.   This is not very good at all in my opinion.    I will write more about the Scrutiny Meeting later as I have not had a chance to properly  study all the paperwork.   I am not sure that Elizabeth would have enjoyed the meeting as much as some of the conferences we have attended.  However I did mention that Elizabeth may wish to come to a future meeting – it is up to her but I am always happy to take her along with me.

Today I went attended the local hospital myself with one of my carers and the chemicals were finally there.  If I had not written to my local councillor they may not have been there.

Unfortunately all of this has meant that the morning has been disrupted. Elizabeth and I would normally go to the Zumba class but instead we have to sort out about getting the drugs which were running short.

Without the help of my carers Elizabeth would not be at home today and once under a care system is rife with control and coercion I may not have been allowed contact with my daughter as they were saying “to whom does she want contact”.   This was all being planned and extra funding being arranged for a CTO and why should Elizabeth be on a CTO – this alone is stigmatising and unnecessary.  I am very pleased that Elizabeth told me how she was put in the position by medical professionals to choose between Mum and Dad and how she did not think this was fair.  When I mentioned this to the lady assigned to investigating my complaint which was very serious as drugs were denied for four days and this resulted in court in a case for “Deprival of Medication” – this person could not see anything wrong with putting a patient in that position.   Anyway the team then decided to take the matter to the Court of Protection to deprive liberty, sever contact, restrict visiting rights and force return Elizabeth to a care home hundreds of miles away from home.   This is all very wrong.    Also at home Elizabeth is not going without food because at the care home if she had run out of money or could not manage to budget properly there was no food at weekends – well this is what I have clearly read from the files.

Speaking of food, I have confronted Jamie Oliver and his campaign on sugar – I would like to see Jamie Oliver involved with an even bigger challenge MH care – nutrition.  The NHS  pushes enormous quantities of powerful mind altering drugs at MH patients and they do not work- this is why I have had to turn to Rotterdam to get accurate treatment from the world’s leading expert in metabolism.  I believe that nutrition is particularly important when you are on mind altering chemicals and I had all the tests done twice at Bio Lab to prove my point but such tests are not recognised by the NHS:   Here are a few more things Jamie Oliver should be looking at mentioned in the hand written piece by guest blogger Stephen who comes round to my house to advise Elizabeth on health eating d is a good cook too.   What is in the food that we all consume available in supermarkets and passed as being “safe”?    I was very keen to feature this on my blog as this not only affects MH patients but the wider public and their mental and physical wellbeing.    Here are some highlights that Jamie Oliver should look closely at in addition to just sugar:

Monosodium Glutamate (MSG) –   All you  have to do is look at the product label and avoid anything with MSG and its ‘E’ number code which is E621, often hidden under “flavour enhancers or flavouring”.

Avoid anything with Glutamate in ingredients/anything with ‘……….protein (ie why protein isolate)/autolyzed yeast, gelatin, ‘hydrolyzed’ ie hydrolysed vegetable protein, sodium caseinate or calcium caseinate/yeast extrat.

It has been publicised recently about ASpartame (artificial sweetener leading to migraines, depression, weight gain, Parkinsons, multiple sclerosis and various types of cancer.   Shame on the FDA – the FDA petitioned for aspartame to be added to milk! without even having to label.

Avoid Saccharin, Sucralose, Sorbitol and Acesulfame-K confusingly labelled Acesulfame Potassiuim.

Extra Virgin Olive Oil (food fraud – adulteration with refined oils)

Rapeseed Oil – often found in humous – back in 1956 this oil was  banned for human consumption by the FDA.

Synthetic D2 – see “Why don’t you Want to Rely on Fortified foods” by Dr Mercola.

Non-organic cartons of “alternative milks (containing synthetic form of Vit D called D2 (ergocalciferol).

Fortified Breakfast Cereals – iron used to fortify cereals is not only synthetic but enriched with toxic iron fillings.   Ensure you are getting enough bio available iron.  See You Tube video by Dr Thomas Levy) – His website lists an article on “why it is not necessary to fortify with iron (because high iron levels in the blood are toxic).

Fortified white wheat flour.

Stephen goes on to mention many more things featured on my website under “Guest Blogger – Stephen”.  Well done for such a valid contribution to my website.

I must admit when I go shopping I have never stopped to closely read the labelling but maybe everybody should be fully aware of.

It  is not just sugar – there is much more than this to consider.

Anyway I had better stop here as I have no end of things to do and tonight Elizabeth and I are helping at the Homeless Supper.

If I get a chance I will write about this Scrutiny Meeting and I have got another meeting next week I can tell you all about.  I can hardly wait to attend this meeting and I am looking forward to the CEP’s conference too.

Before I end this blog, Elizabeth has finally had her referral to the larger scanner in Harley Street.    It is not the first time I have had to take Elizabeth to Harley Street but I feel need to take a day off for this visit.

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