I have never come across a complaint that has been satisfactorily investigated as what a team does when faced with complaints is to investigate themselves.
When a complaint is not resolved satisfactorily you can go to the next stage ie., The relevant Ombudsman. They have 40 days to respond to you but have only ever partially upheld my complaint. In the case of records, the ICO (Information Commissioner’s Office) is responsible. There are also various Professional Bodies for the Professionals, such as HCPC for instance.
Different agencies who are supposed to investigate different areas of complaints.
Take the ICO – If for instance you are deprived information requested in the files, ICO is meant to deal with this but also if you receive something that you should not have received. This is the Organisation to turn to, or rather should be ………….. An extract by way of example of such response you could expect to receive is as follows:
Based on the information provided it is our view that the Trust is unlikely to have complied with the requirements of the Data Protection Act 1998 (DPA) in this case. The Records Manager will meet with the records staff to remind them of the importance of cross checking data and will complete additional training if this has not already been undertaken. In view of the above we do not consider formal action necessary in this case. However we will keep the concerns raised on file. This will help us over time to build up a picture of the Trust’s information practices. I note you would like to know whether note relating to another individual have now been provided – unfortunately the DPA does not place any obligation upon the Trust to confirm this to you so we are unable to provide any further assistance. Thank you for bringing this matter to our attention.
(“The ICO’s mission is to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.” )
A case can be split into two despite being similarly related and in the case of additional matters of a serious nature, you can find this is dealt with by yet another case officer. Elizabeth has had so many decent people willing to get involved in helping her when she decided to come home, this is why they should be protected if there is seen to be cause to act this way. Safeguarding can be a two way matter and I am safeguarding all of my carers.
Some things are not a mistake but deliberate. For example it was deliberate to deprive the drugs, deliberate in terms of the fact that titration would have to be done by scratch and access given to care teams in respect of this and it is stated in the files Elizabeth was without the drug Clozapine for 48 hrs but in fact it was only 26 so it was unnecessary to titrate from scratch.
It is particularly worrying solicitors can turn a blind eye when it suits them. Care staff can also turn a blind eye when something serious happens under their care.
A culture of bullying is evident and as regards the files they are inaccurate and untrue, spiteful remarks written so I feel I should make necessary corrections especially in terms of family history which I can see is incorrect.
Every little thing is recorded in the files like parrot fashion and this is particularly evident leading up to court.
There are some very personal things written against you – nothing nice and certainly nothing complimentary. A favourite word is “aggressive”, but there is far worse than this.
One of Elizabeth’s diagnoses is Aspergers but no-one has ever thought to refer her to a specialist to check this out. She has another report stating PTSD and, considering what happened to her whilst under care, this seems accurate however I am now wishing for Elizabeth to see specialists in the field of PTSD and Aspergers. If some experts have based their reports on these diagnoses then I feel it is only right that Elizabeth has these properly checked out by specialists as I would hate to think of my daughter with a label that is now under considerable doubt ie Schizophrenia and drugged with Clozapine for the rest of her life. Elizabeth continues to get on with everyone around her and I have had no problems with her since coming home. I can see from the files how specialists can vary in their ideas as to Elizabeth’s condition. The latest Neurologist calls me a good mother but I am not the only mother who will research things thoroughly, looking up the chemicals prescribed and conditions and I have acquired an extensive selection of very good books to educate myself on the matter.
There is mention of Elizabeth’s referral to the Bethlem and I would like to comment on that as Elizabeth said she was extremely ill at one point – shrouded in secrecy in this hospital where it is all about Clozapine, no one would have known but I found out and now can read some shocking things such as:
I will add to this in due course.
It is not right to state in the files she had a drug free period. I can see she was put on maximum amount of Olanzapine. What do they expect – as Dr Ann Blake Tracy states any change in medication can cause someone to feel unstable and I think anyone in the world would feel that way if placed in an institution such as this. They say the drug free period failed but what led to her being sectioned was when they mixed the drugs together. Yet another mistake I note when Elizabeth was moved from Cambian after I as Nearest Relative overturned the Section 3 and quite rightly so. Like I say Elizabeth should never ever have been placed on a Section 3 in the first place. At home, Elizabeth is doing her washing, ironing, cooking and cleaning but does have to be prompted. Going out is another matter as Elizabeth is petrified in going out. Thanks to reading books such as Emotional Health by Dr Bob Johnson I have a very good understanding now.
It is stated that Elizabeth was transferred to a home in Wales – Oh no she was not! Elizabeth was transferred to a care home hundreds of miles away which was not her first choice. How on earth can they call it “Clozapine therapy”. This is ridiculous as on this mind altering chemical Elizabeth has become disabled to the extent she cannot walk without feeling dizzy, suffers double vision and after every meal has to go out and it is as though she is suffering from bulimia but it looks as though she cannot swallow that well. This drug is no good but under the local area we do not even know the name of the psychiatrist.
It is a load of rubbish written in this report by the Associate Specialist Psychiatrist Dr A – the reason being that it was 26 hrs without the Clozapine, not 48 as mentioned – so it was entirely unnecessary to ttitrate from scratch. It was done deliberately so that the team had to have access into my home and were asking intrusive questions for the purpose of digging up any dirt possible for court purposes. “report everything that mother says – this is a special case”
Thank God Elizabeth got through all of that and I also bought a book all about the law especially on capacity.
Now Elizabeth is talking freely, she feels comfortable being amongst my friends, some of whom have themselves been under the care system and have great understanding.
This week Elizabeth is away on holiday with the rest of the family. If the team had succeeded in what they wanted to do, she would have restricted leave and they were even considering a unit where Elizabeth would have been desperately unhappy and it sounds worse than prison. I wonder how much such a unit would cost and Elizabeth would just have gone downhill in there and it would have been difficult to get her out of the system. Many become lost in the system and end up as prisoners in such institutions where enormous quantities of drugs are given to them. I would like something done about this terrible situation as I am in touch with mothers who care and would like to see their sons/daughters released as they are not a danger to others as the public would think – terrible that such young people are just left to go downhill and highly drugged to the point they give up. If there was open dialogue and direct payments given to some of these families to provide more integrated care into the community, it would be a lot cheaper than these un-therapeutic institutions where many patients are left to go downhill.
Elizabeth is now telling me about her time in hospital and how she was treated. Elizabeth has joined in well with my courses and conferences. Elizabeth is not well in terms of her physical health and feels dizzy, as though she is about to fall. I put this down to the drug Clozapine and where does it say this drug should be given for a condition such as PTSD?
Every night Elizabeth and I go for walks. I have seen a meditation class once a week where I will take her. We have joined a local Zumba class together. Elizabeth has a trainer that comes to the house and takes her out. It is better now she is at home as at the care home sometimes she would be sleeping at midday and be in bed at 6 pm.
I can hardly wait to tell you all the latest news but first of all want to see the results.
On Friday I am very excited at going to the Chilfest and I am taking one of my former school friends.
Not having Elizabeth this week has enabled me to write my blog as there is little time to do this now, and I wish I had time to reply to all the wonderful supporters I have right now.
I will continue to keep you all informed with all my latest news and the wonderful developments – Elizabeth will be home midday Friday just in time to go to The Chilfest. Hope the weather is good for this event.