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.