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.