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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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