Archive

Monthly Archives: March 2015

My views on mental health care in the UK are based on personal experience and I am in touch with a lot of people who are suffering right now who have their sons/daughters under the UK’s unfair system where they remain in hospitals and care homes for so many years on end and become disabled and then the excuse is risk to self when all that is needed is more support and for a team to work with the family in a fair manner and for psychiatrists to take note of the harm they are doing by giving maximum levels of drugs in care establishments and to understand why a parent would wish to see their son/daughter on minimal amounts of drugs when it is proven that there are physical health conditions.  However all you get is dismissal and exclusion if you dare to request this.

Degrading Treatment – which is commonplace in the UK

I have not only seen this but experienced it myself.

Distressed patients waiting outside nurses’ offices for a long time and the way you are treated if you dare to complain.   I have witnessed more than once professionals smiling at meetings.  If you show emotion, you end up getting labelled yourself.  Psychiatry does not recognise emotions – this is where they go wrong in my opinion – emotions are seen as symptoms of illness instead of helping someone who has suffered trauma, drugs are given at high levels which is no cure at all.    I was never imagining things or being delusional when Elizabeth and I were being harassed a while back -now that I have acquired the files I can see why the team did not wish for me to see them.  The team were visiting for a purpose to report everything that mother said and this they certainly have done to their credit in the files in a nasty manner.  Comments were not just confined to me but to my carers and also to Elizabeth which is awful in my opinion.  By all means go ahead and say what you like about me but why pick on my daughter and my carers.   The contents of these files go on to be read by other professionals who are influenced by them “we have heard all about your past behaviour”  it is like a diagnosis – once given a label sticks for life and there is preference given by the bulk of the team – many of whom are not medically trained to just one of say 5 diagnoses with disregard to whether the label is accurate or not.  It is like having a life sentence.  Whilst some may be happy with a label there are others who are not like Elizabeth.   All these stigma campaigns are never going to do anything good whilst the system allows for someone to be treated in this way –  stigma campaigns are only directed at the public but how about looking at the reality of how patients are treated in the care system itself.

The words “angry” “aggressive” “hostile” are favourite words of professionals that they like to use constantly in the files but there are other much more disturbing things – some too disturbing to put on this blog which I want a full investigation into.   It is easy to write behind someone’s back – how many bother to get the files and this is made extremely difficult.  If a patient originally consents to this the team will change this “you don’t want your mother to see the files”  – in actual fact it is the team who do not wish that mother to see the files for obvious reasons and now I have and I am neither shocked or surprised by their contents.  It is good to know which members of staff are saying certain things about you behind your back and I should feel flattered that I am regarded as a “special case” however I feel this status discriminates against other patients who need attention and who are ignored.   A special case is when there is money or jobs involved –  £60000 care home fees.  A CTO about to be organised costing/needing more funding of public money.  A special case relates to anything that has court proceedings when anything said or done can be used against you in court by the team as again it costs thousands to take you to court.   Deprivation of Liberty is not being handled well and patients are not being treated fairly.  To withdraw “treatment” is to try and force return a patient back into care where it was planned to place a section upon that person.   Instead of working with the family they work against the family.   Instead of understanding they bully and harrass.

We spent hours and hours waiting for professionals to help at local level but were told to take her back to the care home in order to get the drugs.  I was afraid my daughter would suffer injury so I ordered a cab to take Elizabeth to Harley Street as no one cared locally.   In Harley Street you can get to see a consultant psychiatrist immediately however none could help me re the Clozapine so I contacted Novartis and they could not help either. In the end I have to contact solicitors as I felt her life was being put at risk by professionals.  I may not be happy with the drugging of my daughter but I know that you cannot just stop taking the drugs.    The team ignore physical illness for instance –  there is no genetic links to kidney disease in the family.    There are other disturbing things too in this respect. Past family history is incorrect.  Everything I thought was going on has been confirmed so I cannot be accused of imagining things.   If something serious has occurred under care this recorded as “Delusions” .   I am disappointed in the Police –  I am not impressed with certain comments.   I am disappointed with the legal profession as I do not feel they care for anything much apart from their expenses.  I am disappointed in the whole system as there is no backing for someone like myself in the court system. My own experience of Ct of Protection is good but when you read the shocking contents of the files which are highly inaccurate,  when presented to Court who will be believed especially when  the entire team can write what they like about you behind your back in a nasty way.  Complaints are dealt with unfairly as  they investigate themselves so when the complaint goes further up to say the PHSO for instance or the CQC who is going to believe a mother or a patient in preference to the entire team who stick together like glue to protect one another.

My main concerns just like other mothers is the huge level of drugs being prescribed to young vulnerable patients in hospitals and care homes.  When someone is so drugged up they are too ill to contact solicitors and are at the mercy of professionals who ignore physical health.    I have seen the comments in the files “optimise the drugs!” from a Neurologist going back to when my daughter was originally under local “care”.

I am sorry for mothers/parents who wish to get their sons/daughters out of the system but cannot as professionals play on risk factors and some of the parents have to been able to find a firm of solicitors willing to help them.  Some have been in the system for years on end and are being deprived of phones and contact with families, leave etc .   Some have developed serious physical conditions as a result of the huge amounts of drugs given and there is no accountability in the UK –  I know of several cases.   Certain professionals it would seem are above the law.

Elizabeth is improving at home now because she is being treated like a normal person and encouraged to do things for herself she is getting better and I have a wonderful trainer/nutritionist who comes to the house twice a week.   She needs prompting to do basic things and could not manage on her own 24 hrs but that is no excuse to keep her stuck in the care system for years and years on end to the point of complete disablement with destruction of her physical health due to huge amounts of drugs given.

When Elizabeth first came home she did not want to go out .  All the time she would cling to my arm and that of my carers – sometimes it was impossible to get her to come out and she was ill at the thought of going out.  She is getting better now thanks to being in the right environment.

Whilst at the care home we took her to Woburn Abbey – Elizabeth could not sit in he café for long and could not enjoy the day out.  Same applied to when I took her to Big Feastival – Elizabeth was not well and wanted to go home on arrival.  Now things are different –  I am able to take Elizabeth out to London and in crowds.  She is walking better now and has proven that she is not an entirely hopeless case.   How many more young people are treated like this?   Well I am in touch with parents who are extremely upset as their sons/daughters are stuck in hospitals and care homes a long distance from home and being drugged up to their necks.  Professionals are abusing patients’ human rights and huge sums of money are being wasted by keeping someone in hospital long term or care homes instead of helping families.  £61 does not go far on carers allowance and should be increased.  Direct payments should be given to families – this worked well with my father who had Alzheimers.   When everything about home and family is written about behind your back in the most nasty way how can you trust the professionals?  When consultant psychiatrists do not wish to see you or speak to you on the telephone – I do not think this is good at all and this shows that they do not care.    I do not think that managers or non medically trained professionals should be as involved as they are in terms of “medication” to the point they themselves push the drugs to patients.  I therefore do not agree with integrated care as I have seen that total disregard has been given to the wellbeing of my daughter by non medical personnel who have a lot of power – power to take you to court and sever contact. – power to put someone back on section even though they are doing well and this I would call abuse.  I would also call this a waste of public money.

Some contradictory Points:

In a letter addressed to me, following my written concerns regarding “medication” given at high levels – here is the response from a service manager.

“You are certainly right in emphasising that medications can have side effects and that the dosage should be reduced to the lowest level.  A psychiatrist treating a patient will explain possible side effects and will help a patient who has mental capacity make an informed decision about their treatment”

He continues in saying “I am satisfied that this process is being followed with regard to present anti-psychotic medication.”  

My response: You are not a doctor and how can you be satisfied especial with the maximum drugs given to my daughter? 

He then talks about mental capacity:    I would agree with the following points:

“For someone to be classed as seriously incapacitated they would normally be very severely handicapped and incapable of feeding themselves for instance”.   

I recently got slated on social media for using the word “handicapped” – well in the case of my father I pointed out he was severely handicapped in the later stages of Alzheimers –  I fail to see what is so offensive about this when I have seen the most shocking things directed at me as a mother and my daughter in the files.

I would comment that capacity can be played upon – for instance huge levels of drugs as are given on the acute wards can destroy thinking ability – when it suits them a team can say that someone has or hasn’t got capacity but Elizabeth did not want the capacity assessment as she was not feeling too good it is assumed she does not have capacity when all along this without doubt.   Deprivation of Liberty was used to try and force her back into care and to sever contact with me.

The service Manager talks about Physical Health and the importance of regular physical checks/contacting the GP – all well and good but I would like to see this service manager cope on huge dosage Quetiapine – maximum 800mg and other chemicals on top of this –  I was shocked to see that Elizabeth was given even more chemicals on top of this such as Haloperidal and Chlonazepam.    It would appear the team have not properly read the files and it is a good job that I as Nearest Relative have acquired them as I am looking after my daughter’s physical health and when these professionals talk about “best interests” – it certainly is the best interest that Elizabeth has come home – at least I am not dishing out Lorazepam and contra indicated drugs constantly  Even the GP in Wales did not know why she was put on the Metformine.

Parents/Carers:

As a carer/parent you are excluded – confidentiality and capacity played upon so as to deny access to any information and this can be done to cover things up.  I have been looking into capacity as this really interests me –  capacity is the ability to make choice.  This would apply in Elizabeth’s case and she certainly did make a good choice to come home and has had the capacity to tell me all about the coercion going on at the care home.  My father with Alzheimers in the later stages was regarded as someone who had no capacity however I knew that he could understand some things – just because my father could not communicate effectively, emotionally he showed signs of understanding when once a nurse stood over his hospital bed discussing delaying of his release from hospital.

Writing someone off:

The trouble is with the care system in the UK many young people are currently being “written off” –  when someone like Elizabeth is labelled “treatment resistant”  they are not given hope or encouragement and left with little/no support in the community.  It is wrong to write someone off as being beyond help and dismiss emotions and what may have happened to that person.    It is not a case of shortage of beds – it is a case of wrong treatment.  The very fact that there is a shortage of beds means that the treatment is  wrong.

At home Elizabeth is safe and happy.  It is insulting to see how she has been described in the files.   Elizabeth sometimes needs prompting but will always get on and do her own washing/ironing. She can cook basic things.  She is gradually gaining confidence thanks to the personal trainer who comes to the house twice a week.  Elizabeth suffers from Agoraphobia but despite this I manage to take her out but she is too afraid to go out alone.   I  hope she will eventually as there are so many nice things around this area all within walking Studio nearby and another gym that is closer.  The trainer took her out today.   No help is given to the family but £60000 and more is being saved to the taxpayer.

Last Weekend:

Where Elizabeth has gained weight – the drugs are notorious for weight gain,   I try and get in very healthy food. We went shopping in East London and Elizabeth bought some very nice clothes.  On Sunday Elizabeth did not want  to go out at all so we had a restful day at home.

This weekend:

Taking Elizabeth out with me into London to an exhibition.  Hoping to meet former patients./survivors.

I try to make the most of my time with Elizabeth at the weekends to encourage her to go out and regain her confidence – by meeting former remarkable patients who are getting on with their lives is wonderful inspiration and by going to the courses/conferences and listening to decent professionals speak gives us hope that one day the Government will take notice and do something like raise carers allowance and ban ECT and huge levels of drugs being forced on patients long term and recognising that there should be choice and decent care that is based on holistic/therapeutic /nutrition just like Chy Sawel wish to offer.   I would like to see politicians attend the forthcoming Maudsley Debates.  Elizabeth and her sister will be with me on this occasion and there will be other mothers going too who wish to see action and not just words.

Advertisements

Today I’m am very happy – it’s Mother’s Day in the UK.   What better gift could I have but my daughter Elizabeth being home again after so many years.  I’ve been thinking today of all the mothers and people who have relatives currently held prisoner under the cruel MH system of the UK, a system that you cannot easily get them out of.  The public are unaware of this as it is not being reported.  I am in touch with many people in this sad situation where sons/daughters are sent hundreds of miles away – in some cases they are not allowed phones to stay in contact.  The way families are treated is terrible in the UK and when I have spoken to such parents they are heartbroken –  many cannot afford to visit very often, bearing in mind distance.   It was not easy for me –  Elizabeth was sent to Wales and you cannot just get in the car and drive down for the day there.  Not only was it expensive but there was not one ounce of help in terms of advocacy.  Once someone is moved away from home and family, they are put in a situation where there is strict control  in a coercive environment.    The patients are not cases where they have killed someone,  they are cases where someone cannot cope in the community and need extra help.  The mothers and families are people who care and are desperately unhappy.     The Government pays only £61.35 for Carers Allowance under a hospital thousands of pounds are being spent a week.   Under a care home £1150 per week.    I do not know how much extra it is to put someone on a CTO in order to force them to take drugs for the rest of their lives.   All of this is going on whilst A&Es and maternity units and other things that affect everyone are being cut under the NHS.

I am getting more and more letters and have spoken to several parents/husbands etc who are at their wits end.  I am finding that what I was faced with is commonplace.

The other area where huge sums of money being wasted is under the legal sector.

If you are a Nearest Relative you can overturn a section.   First of all the patient has a Tribunal – quite often this will fail.  As the Nearest Relative you can appoint solicitors paid for by legal aid at this level.   You have to go through a Manager’s Hearing first but at the Manager’s Hearing they refused to release the files to my solicitors.  This did not go ahead.    I meanwhile had arranged with a nicer psychiatrist who was covering duties for tests to be done for Dr William Walsh.  I had arranged for these tests to be carried out at the Bio Lab and of course they came back showing significant decline in terms of physical health.   Tests such as these are not cheap and the team are quick to dismiss them as they do not care about physical health and like to concentrate on maximum drugging.   So Elizabeth said she was unhappy – eventually an independent psychiatrist was appointment – the choice being that of the Nearest Relative.    Being so drugged up in this private sector hospital, not seeing the family regularly, it was difficult for things to progress quickly.   Elizabeth’s solicitor should have visited her and helped her but I did not think that was the case.   Things just became long and drawn out and the more correspondence involved the more expense at all at public expense.   This is where the money is going.

Under the Court of Protection where a Council can deprive liberty stating the patient to have no capacity, you get no representation in court.  It costs about £800-£900 a week if you have a job and home to provide your own solicitor.   I do not think it is a fair system at all.    For a family to have a child or vulnerable person taken away is terrible and so is it terrible for families to have someone stuck in the system when the parents are decent and care – in instances where the patient may have reacted badly to drugs in the past and I am talking about prescribed drugs.  Not everyone has taken illicit drugs to get themselves into the situation of being admitted to acute wards.  Not everyone has abusive parents.   Most have suffered some form of trauma and being on a noisy overcrowded ward is untherapeutic and can affect someone’s behaviour.  I never want to see Elizabeth back on any acute wards again as I know these are places where psychiatrists dish out drugs at huge levels and I can see that this kind of place just resulted in Elizabeth becoming worse.   Since being home, her behaviour has been completely normal but disabled due to being on last resort Clozapine which is far from a wonder drug in my opinion.  I have read the files of shocking content with Elizabeth who has a right to know.  Even past history recorded in the files is wrong.  The words “hostile” and “aggressive”  are frequently used out of context – when something goes wrong this is covered up – if you complain or show any kind of emotion you get labelled yourself.  Never have I ever threatened violence to the team but that does not stop them from labelling you as they so wish.  There are things missing and other things I did not expect to find amongst the files.   I have requested certain papers that are missing and have been refused them.    To get rid of a Nearest Relative can be a convenient way of covering things up when there are serious things to hide.

Taxpayer’s money is being wasted, vulnerable people are kept for years on end incarcerated in hospitals and care homes.  They are being drugged excessively and end up being disabled.

If the Government were to give more money to individual carers that would be good but £61.35 does not compare with the cost of a care home or private sector hospital for instance.  Diabetes is a condition caused by the drugs, Parkinsons disease and blood disorders.  I suppose keeping someone away from their families is a way of safeguarding themselves for when things go wrong.  If someone does become injured as a result of care the legal profession does not want to know.  I do not think the legal profession is treating vulnerable patients fairly – it is wrong that a hospital should recommend either advocates or solicitors.

I do not think it fair that there is no legal aid representation at higher level in courts especially in cases such as Deprivation of Liberty and severing of contact with a family member.

I think the complaints system is wrong as I have seen at first hand how they investigate themselves.  Who is going to question these professionals when they stick together like glue and make you out to be a terrible person all behind your back.

The Council has cut funding for the local Carers Centre but they have no end of funding for “special” cases – “go in twos – report everything that mother says”.  All this, when there are some people who  would like attention.

I wish we had a fairer system in the UK such as Open Dialogue.

I wish we had a National Metabolizing Scheme –  it is all very well saying “risk to self or others” being the criteria for release from section but most important of all, underlying physical health problems are ignored –  if someone is chronic treatment resistant –  this means poor or non metabolizer – the treatment being given could be doing more harm than good and only experts who are familiar  with the drugs themselves should be allowed to prescribe them.  I was appalled that doctors had not heard of the tests I wanted to have done (P450 liver enzyme) and I came to the conclusion that many were not up to date with their knowledge.  What do they know about adverse drug reactions ?- drugging of patients is being done as a means of convenience/control with total disregard for physical health.  They are driven by blind ideology.  Many do not even know how the drugs work.  To prove capacity under Court of Protection once again an independent psychiatrist is appointed – must cost thousands for a report to be prepared on top of the court fees.  The correct regimen for administering psychopharmaceutical medication is by titrating to a minimum therapeutic dose, not only to  protect the patient but to reduce the cost of treatment.

Degrading treatment against mental health human rights seems to be commonplace.  The withholding of drugs is in breach of Article 3.

Kucheruk v Ukraine (2007) ECHR No. 2570/04 6 December – lack of adequate medical treatment and lack of adequate investigation into the applicant’s complaints of ill-treatment.   (The person investigating the complaint passes it to the department the complaint is against, the complaint is investigated by themselves)  all of this  very relevant in Elizabeth’s case.

Being at home has meant that I can share all the nice things with Elizabeth such as wonderful shows and we went to see the brilliant show “Once” last night which we both enjoyed.   We have seen two other shows recently and I want to go and see “Beautiful” again. Yesterday we met with former patients and today we have been to the cinema to watch  the sequel of Marigold Hotel – a very good film.

It is cheaper to pay more Carers Allowance than put someone in care and more thought should be given to this by the Government.

Apparently I cannot be regarded as a vexatious complainant  – however they regard me as being Prolific –  that is because none of my complaints have been answered satisfactorily.

Prolific complainants are those who raise the same issue despite having been given “a full response“.  The kind of behaviour they  display are as follows:

Complaining about every part of the health system regardless of the issue; 

No this is wrong!  I as a mother think that there are good things within the NHS – I am not talking about MH care though.   I admit to disliking a system that I personally regard as abusive , that allows the forced drugging and restraint and ECT to vulnerable patients who can be easily coerced if given huge quantities of mind altering drugs. I  think that the system is failing many vulnerable people like my daughter but when you  as a parent/carer point things out you are disregarded and labelled yourself as someone who is troublesome or vexatious.  Patients risk being further labelled as having symptoms if they complain or show any kind of emotion as to how badly they are treated.

Seeking attention by contacting several agencies and individuals;

When someone is not receiving adequate response who can blame them for going to other “agencies” as naturally that person would like to see something done at the very least.

Always repeating a full complaint;

If a complaint has been brushed aside and not answered – this is a reason why complaints are repeated.

Automatically responding to any letter from the Trust;

Well that rules me out as not only am I too busy the content of any such letter is always the same.  The words “satisfied” and “excellent care” have been mentioned in response so it is a waste of time and energy even if your complaint is very serious and something really bad has happened.

Insisting that they have not had or received an adequate response;

Well if a complaint has not been dealt with properly it is no wonder someone insists they have not had an adequate response.  I will explain later about this where marked  **

Focussing on a trivial matter;

When there have been incidents leading to serious investigations whilst under care, I can see that the Trust’s procedures are to regard these matters as “trivial”.  No-one will ever admit responsibility or say “sorry” – unless they are forced to and this can only be achieved in court or as previously ordered by the Ombudsman.  If an apology is not forthcoming then they have to back down on certain things and even forced to apologise.

Being abusive or aggressive.

It is easy to label someone as abusive or aggressive. This is not said to your face but behind your back so that when the next team look at the files they believe everything unfairly written and that can in itself have a detrimental effect on the care of the person concerned.  Also in Elizabeth’s case there is disagreement between more than one professional on diagnosis and treatment.  

My interpretation of someone being abusive or aggressive is threat of violence ie to kill or hit someone, which is not something I have ever done.  Neither have I been abusive in swearing the F word  yelling, screaming and shouting as a visitor on the ward but if something badly goes wrong and you dare to criticise or complain this is regarded as aggression. The worst I have done was  in fact to criticise the placement of my daughter locally when I could see that things were not working out.  I have also criticised the “care” of maximum drugging and inability to protect my daughter whilst under care.

Whilst under local care this is the medical attention given to my daughter:

Concomittantly prescribed drugs at huge dosage regardless of serious health problems:

Quetiapine XL given at 750 mg and this was raised to 800mg

On top of this Clonazepam 1mg

Lorazepam 1 – 2 mg – max 4 mg/24 hrs

Haloperidal 5-10mg (30mg max/24 hrs

At the Bethlem enormous amounts of concomittant drugs given:

Maximum dosage of Olanzpine mentioned – this mixed with the Quetiapine.  800mg of Metformine given with Clozapine 300mg despite the Advanced Declaration of no Clozapine,  then Bisoprolol .  Elizabeth was not allowed any leave at all from this hospital and I was only aware of the contra indicated Metformine and Clozapine and or course no doubt Lorazepam was given and paracetamol as Elizabeth would complain of headaches.  One drug to counteract another and when you mix two together this can cause adverse behaviour and so a section is placed on that person.  The answer I got when I queried the Metformine being for diabetes Type II was that it was for weight loss and I knew this was being given off label.  I had no idea that my daughter was on Bisoprolol for heart problems.   Now I know everything that is kept from the family and made secret and when a patient is drugged so steeply they can hardly have consent/capacity at times to agree to a drug that they have previously said no to by way of an Advanced Declaration.  To gain “consent” this is achieved by means of coercion, the whole team working closely together with one Agenda in mind.  If a person is drugged so highly they are like “putty” in the hands of the team and made to feel bad if they do not agree and that could mean agreement on drug treatment or ECT for instance, or change in solicitor or to even sever contact with a parent and displace that parent as Nearest Relative for example but sometimes this coercion can backfire.  Sometimes despite the enormous amount of drugging a patient can still retain capacity to say “I am being put under pressure Mum to choose between you and my dad and I do not think it is fair – I do not want to go back there Mum”

HERE IS THE TRUST’S POLICY:

Trust’s Policy and Advice from Ombudsman and here are the guidelines:

Regardless of the manner in which the complaint is made and pursued, its substance should be considered carefully and on its objective merits.

Well I thoroughly agree with this above.  A very good guideline.

Complaints about matters unrelated to previous complaints should be similarly approached objectively and without any assumption that they are bound to be frivolous, vexatious or unjustified particularly if a complainant is abusive or threatening.  It is reasonable to require him or her to communicate only in a particular way – say in writing and not by telephone – or solely with one or more designated members of staff but it is not reasonable to refuse to accept or respond to communications about a complaint until it is clear that all practical possibilities of resolution have been exhausted.

Again agreed and by the way practically all my complaints have in writing as I like to keep records of things.  Responses are usually copied in with many different members of staff when you write or they respond to a complaint and as I can see, the same names are involved time and time again.

It is good practice to make clear to a complainant regarded as unreasonably persistent or vexatious the ways in which his or her behaviour is unacceptable and the likely consequences of refusal to amend it before taking drastic action.

It would seem like any complaint does not go down well and is clearly not acceptable but if a complaint has not been addressed how can someone be regarded as having unacceptable behaviour in being vexatious or prolific in their approach?

Apparently it is stated “it is inappropriate for SB to be labelled as a vexatious complainant”  “she keeps bringing up new issues which makes it impossible to label her a vexatious complainant”   Had I gone to the Ombudsman, there was a great deal of concern about the Trust being criticised and the feeling was that the Ombudsman would take the view that because different issues were raised in the complaints, SB would not therefore be considered vexatious.   So I could not be called vexatious, despite the whole team wishing me to be labelled as this, so I have read in the files.  In order for this to be done someone would have to check that all her complaints had been answered and that she did not raise anything new.   I can save the bother by stating that “No my complaints have not been answered” – the latest one being the deprival of Clozapine for several days.

A team will try and restrict a complaint to one person – it is all too easy to fob someone off when certain management personnel look upon you as being “troublesome” – I am even called that “poor” woman.  Well I do not consider myself to be a “poor uncontained woman”.  This is not the worst that I have been called – yes there is even worse comments.

Below is what one professional has to say:

“in the context of SB’s serial communications over her daughter ‘s care and treatment these in my view do not warrant further formal investigation”

Between 7 – 10 names are copied in – the responses all the same “we are satisfied our treatment and care arrangements are satisfactory”.  It is interesting but not surprising to read what is written behind your back by professionals, the bulk of which are not medically trained.

If a member of staff believes that a complainant is being unreasonably persistent or vexatious they should raise the issue through their line management to  Director level if necessary.   I have had to do this myself when my daughter was being visited in twos by members of the Home Treatment team despite telling them not to call – it was unnecessary as the titration had been completed and all they were doing were asking personal questions.  I complained to the Director of MH and the visits stopped but they were ordered in the first place “go in twos and report everything that mother says”.  I had to call the police –  I invited the police to my home as I would rather have dealt with the police as the team were ignoring Elizabeth’s wishes.

The Trust has a zero tolerance policy which applies to verbal as well as physical abuse and aggression.  If a complainant is abusive or threatening staff should make a written report using the incident reporting form.  A complainant who is abusive or threatening should be reminded verbally in the first instance and in writing if he/she persists about the Zero Tolerance policy.   This is all very well and good but is biased as aggression and hostility can be shown towards the vulnerable patient and family yet this is allowed.  

I have found staff to be aggressive and have been threatened quite a few times  and that is why I address my complaints in writing.   There is a 100% tolerance towards staff as they all stick together and investigate their own complaints.   I am laughing about this –  I wish I could investigate myself.  In any other profession this would not be allowed.

MY COMPLAINTS AND THE COMPLAINTS PROCEDURE.

Not everyone has viewed my complaints as trivial – for instance the Healthcare Commission criticised the way/ manner in which my complaint was dealt with over a very serious incident.  This led to an apology at top level.

This is how complaints are dealt with in the local area:

You write a letter to the Chief Executive of the Council.

They supposedly investigate – in my case my complaint was deprival of Clozapine for several days putting life at risk.

You then chase up a response as there is a wall of silence.

You then get a letter from someone dealing with the complaint (someone with whom I actually spoke to on the phone)  this person could not see why Elizabeth should be upset by being asked to choose between Mum and Dad.

Now this is interesting …………. the person assigned to look into/ thoroughly investigate the complaint decides that the best person to answer that complaint is none other than the person who the complaint is mainly about as in this instance –   so the complaint is answered by the person or department that the complaint is all about  ……………..”you know the family well and are best placed to deal with this” – words to this effect.  This same person who was assigned to investigate the complaint is quoted as saying “I have no doubt that this patient would benefit from a hospital environment”  “We have to be more robust regards to why institutional care would absolutely benefit this patient.  In a nutshell it is about proving why your assessment as Care Coordinator is paramount in setting the agenda of care needs required.”

You have clearly not done your investigation properly. You passed my complaint on deprival of drugs to the department who you saw as “best placed” to investigate in other words the department to which the complaint was addressed so that they could investigate themselves.   You have not thoroughly read through the file –  in the file it says how distressed Elizabeth was in hospital so where do you get this idea from that a hospital environment is best? It is clearly not as it is mentioned that hospital environment had a detrimental effect on Elizabeth yet you say differently.   

Then comes the usual letter from the Chief Executive’s office – they are satisfied everything has been dealt with fairly however I can prove otherwise  as I can see exactly what has gone on and this would explain why none of my former complaints have been properly dealt with and by the way  they were not trivial complaints. They were very serious complaints and new issues as more and more serious things came to light.  For anyone who doesn’t know Clozapine is a last resort drug for Schizophrenia and given to those regarded as “treatment resistant”.  I thought this term at one time was ridiculous but I have learned a great deal about “treatment resistance” – poor or non metabolizer.   The dosage is said to be too high by those who really know about the drug – the pharmacologists- not the management team involved.

Since  coming home no longer is Elizabeth in bed at 6.00pm and sleeping lunch time.   I am trying my best to get her out to regain her confidence as I want her to be independent and not dependant  on others.   Elizabeth has a Freedom Pass but unfortunately she cannot use it freely -she relies on people to take her out as she has developed Agoraphobia.  When someone is institutionalised for so long they become dependent and disabled so how can institutionalisation be best?.  It awaits to be seen whether Elizabeth will be refused a this Pass which is due for renewal end of March based on current relations that are rock bottom not only between myself but Elizabeth and my carers who want certain reassurances  in light of disturbing things in the files.  Unfortunately Elizabeth is not able to work – very disabled due to the high amount of drugs given and could not get herself out alone to attend appointments or even go for the regular blood tests without the help of close friends.  If I did not have this help I would have to give up my job which is full time.

In May 2014 when Elizabeth came home  to say from where she was placed after long hospital admissions I had every intention take her back as agreed until I heard her disturbing account of what was going on and when a member of staff said “we are not speaking to you any more as Mr B is next of kin”.  At first she was happy until  a nurse put pressure on her to choose between Mum and Dad and Elizabeth quite rightly felt upset about this and did not wish to return –  to cut a long story short she has been at home now for nine months and is doing well.   There are shocking things written in the files but I see a first hand that my daughter is gradually getting much better and I have plenty of witnesses who would agree with that.

When the drug Clozapine was deprived I did everything I could despite my feelings about the drugs to get it as I know you cannot come off these drugs immediately in one go.  I wrote to Councillors and received no response.  I wrote to my MP who does not involve himself with issues on care. I sent my blog documenting my failure to secure the drugs to all leading politicians via social media.  I offered to drive hundreds of miles to pick them up and went to Harley Street in desperation having contacted solicitors when attempt after attempt failed at getting the drug locally.-   When someone is not on a section or CTO it sounded very suspicious to me and I was absolutely correct to be suspicious.   There is a lot of money to be made by keeping someone in care at taxpayer’s expense at a cost of £60000 a year plus extra money to be made by arranging a CTO.   But why should someone who is complying with the drugs, having been imprisoned for several years, sent hundreds of miles away from  home and family, denied contact with a mother the team regard as a vexatious complainant be forced back into care/institutionalisation when they are unhappy.  Why should that person be treated in the most despicable manner with their life threatened by deprival of drugs by a team of professionals who had one agenda to re-section  her and sever contact, restricting visiting rights.    Whilst in care not only did hundreds of pounds worth of possessions go missing but I am unable to mention certain things that happened whilst under care which are too shocking to put on my blog here.

Elizabeth was traumatised at being on the local acute ward which was not peaceful and she was displaying signs of adverse reaction such as Akathisia.  She was under the “care” of a scheme in the local community where she went missing.  She is lucky to be alive after what happened to her.

The Royal Bethlem hospital also gave maximum amounts of drugs too – this regime was followed by private sector Cambian and then the care home.

I can see now why they did not want me to see the files or Elizabeth –  physical health is ignored but who is going to find out with a team working so closely together who will stop at nothing to achieve what they want to displace you, to sever contact and no one would ever find out about anything serious then – the person concerned would be distanced from their family and be so drugged up time  that this person could not be in a fit state to answer questions, things would be covered up completely then.

ON A HAPPIER NOTE:

Saturday – a busy day out all day long with Elizabeth in Central London.   We went to see a Healthy Eating Show at Olympia.  I took Elizabeth to lunch at the wonderful Wholefoods store in Kensington High Street.  On the top floor there is an abundance of choice in regard to restaurants.  Elizabeth chose Japanese food which is very healthy.  At the last minute decided to see a show second week running.  Last week we saw “Beautiful” – the Carole King Musical which I hope to go and see again.  I wanted to see the Musical “Once” but this was sold out.  We were in the end very lucky and fortunate to get tickets to see the show “The Commitments”  –   I thought this show was very good and at the end everyone was standing up and singing along and dancing in the aisles – like a party atmosphere.  I have booked tickets to see a festival later on in the year and my course through ISPS in Liverpool.  I hope to meet up with one mother I have go to know via social media who has also gone through a shocking experience with the care of her son.

It is good to be able to share nice things with Elizabeth in light of all that has been unpleasant – none of this would be possible if it were not for the support I have had from close friends/family.  Thank you all.   Many thanks also for the wonderful support I have had from complete strangers via social media.

%d bloggers like this: