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.
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.
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.
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.