I'm a young adult with high-functioning asperger's. I have a Social Worker and I receive support from NAS. Asperger's is all I have, I do not and have never had schizophrenia.
My concerns aren't about how my support workers support me, but rather to do with how information is passed on and used.
A while back there was an incident in the community whilst I was with a support worker, I feel as a result of the information passed on I have been *** on by the system from start to finish which has caused me harm and given no benefit. here is a summary of what happened:
-Support worker passes on her views on what happened to NAS management.
-NAS management pass information onto Psychiatry.
-Psychiatry wrote a prescription for medication (Risperidone, an anti-psychotic) and this prescription was given to me by my Social Worker when she came for a home visit along with a community nurse. I didn't see the psychaitrist who wrote the prescription until my next routine appointment which was months later.
-No information about possible side-effects about this medication was offered to me, and when I asked the nurse about side-effects all she literally said was "the side-effects listed on the leaflet are just reported ones, that means you might not get them".
-I took the medication, and started to experience very significant side-effects- loss of enjoyment from things I usually enjoyed, complete lack of motivation and interest in anything, numbness of feelings, difficulty even thinking, difficulty sleeping (the medication makes you fall asleep but I often woke up and found it hard getting back to sleep) and worst of all I developed what I would describe as a burning-headache which I didn't know at the time was a side-effect so it also caused psychological distress now knowing what it was. I also started self-harming and having suicidal thoughts.
-I saw 2 GPs, 2 psychiatrists, a CPN and people from the "Crisis team" about my burning-headache and not one of them suggested it could have been a side-effect of Risperidone. Their opinion seemed to be it was anxiety. Yet I'm had anxiety at other times in my life before and after this medication and never felt anything remotely like a burning-headache.
-The hopelessness and distress from this led to an almost suicide-attempt which led to a voluntary admission to a psychiatric ward.
-The appointments in the psych.ward were uncomfortable- for starters they take place in a small room with multiple people (you, the psychiatrist, their note-taker, your key-nurse for the day and a pharmacist); the meeting feels very rushed, you are snapped at and treated like a piece of *** and instead of suggesting the Risperidone may be to blame the psychiatrist wanted me on a even higher (quite a heavy) dose of Risperidone along with the max dose of an anti-depressant. At that point I was suspecting the Risperidone may be to blame so I requested to come off it, she wasn't pleased but let me come off it.
-Interesting to note in the psych. hospital none of the patients gave me any trouble but one of the nurses said an unprovoked abusive comment to me, and I overheard a different nurse say something abusive about me. I also witnessed one of the nurses raise his voice and swear at another patient.
-I was discharged (with just 1 day notice) and shortly after coming off Risperidone (which I had been on 10 months) the burning-headache went away completely along with all the other side-effects. I felt so much better and could actually enjoy things again and think clearly with a clear head. I discharged myself from Psychiatry believing it not to be in my best interest (I was only having routine appointments just because I have asperger's).
-Also worth noting the reason I was put on Risperidone in the first place was because of what allegedly happened 10 months prior. That was just one day and that day passed.
-I then acquire a copy of my medical notes and observed the following:
----- When I was admitted I found out my Social Worker at the time had told my psychiatrist (in her words) I was "having paranoia and possible delusions because I think people cannot hear me" (amongst other things but this is a good example). I actually do speak with a very quiet, fast, monotone voice which many people do struggle to understand (family can vouch for this) and it appears she has twitsted that to make it look like it is just poor mental health. She never told me that was her views or that she had told that to my psychiatrist, and the psychiatrist never asked for my views on what she passed on. I am wondering if that info could be why the psychiatrist wanted me on such a heavy dose of medication. I am let down by how poorly my needs were understood by that Social Worker and why I was not given the opportunity to give my views on what she said. As a Social Worker I do not think she should be saying I have "paranoia" or "possible delusions".
-----Re the incident i found out that Social Work had actually TWISTED and ADDED TO the information NAS had passed onto them (which of course made it sound worse and more dramatic). Which means the information Psychiatry used to write a prescription was actually twisted as it was passed on. And Psychiatry wrote the prescription without hearing my views first. My views on this were worth nothing, I got no opportunity to say if the information psychiatry received matched my perspective or to give my own views. The views of patients are worth nothing and Psychiatry assume everything Social Work passes onto them is factual.
-In psychiatric hospital I found the psychaitrist and the staff very difficult to talk to and I recevied no support from my Social Worker in there. I did send her an email telling her what I found difficult about my time there but got no reply. After discharge Social Work offered no support and were unwilling to listen about my experiences.
-I got a new Social Worker and tried to tell her about my experiences in hospital and to explain to her that I really do have a quiet voice which makes life difficult for me (it limits the number of people I can speak to and numerous people throughout my life have thought I have ignored them because they haven't heard my reply) but there was no active listening and all she would say to me is "I can't place judgement on your experiences" which caused frustration because I didn't want her to ever tell psychiatry I have "paranoia/delusions" when I don't just because she doesn't understand. It took months before she finally admitted I do have this difficulty. The only times a Social Worker has spoken to me have been in a very quiet room (which is not representative of other environments) so that may be why they don't understand.
-I was hoping that if Social Work could gain an understanding of all this that might help support me better but they just aren't interested, at a recent meeting with myself, Social Worker and a NAS manager to discuss my support my Social Worker told the meeting that I "discharged myself from Psychiatry because I dislike the Psychiatrist" which I have never even said. It feels like everything I have ever tried to explain has been worth nothing. I may have said I "didn't like the way she spoke to me" but that does in no way mean I dislike the person. She also doesn't seem to care that I got better after stopping Risperidone and seems more concerned with the fact I said no to all the extra medication psychiatry wanted me to take. It's as if professionals don't care if you get better or not, they just want you on medication.
-I have asked Social Work why didn't they ask for my views on what they tell Psychiatry, the reply was "we don't have to". I also asked my GP why didn't Psychiatry ask for my views on what Social Work had passed onto them and (as I expected) was told "they don't have to". That's the attitude. Services "don't have to ask" for the patients views so they don't leaving the patient no opportunity to challenge what others think or any info that is passed on.
-I expressed concerns about the information Social Work passed onto psychiatry. Social Work told me "bring it up with your GP since it is on your medical notes" so I did but then my GP said "the info came from Social Work, bring it up with them". In other words noone wants to accept responsibilty.
That's my views on what happened. Feels like I was *** on from start to finish. It shows that my views on incidents are worth nothing to any service, there is very "pro medication" culture where the system just wants to dish out medication and that putting patients on medication is more important than if they get better or not. That's about it. I feel if my views had actually been asked for and valued I may not have been prescribed medication at all.
The only winners here are big-pharma (in this case J&J) who make money every time a prescription for their medication is written. If I had committed suicide it would have been because of medication from J&J and they would have profited from it.
Sorry that happened to you. :(
Experienced similar myself. Went on medications, became more suicidal, could have died.
It's a scandal that people in this country don't care more about how people are dying, and being left without decent help, to just eke out an existence, rather than actually live.