"My son was diagnosed with Schizophrenia 20 years ago"

About: Collective Voice: North West Standing Conference Royal Bolton Hospital

(as a relative),

My son suffers with schizophrenia. He was diagnosed when he was 20 years old and is now 43 years old. He hears voices and has hallucinations. He tells me he feels, from looking into books, that he has been given the wrong information and is prescribed the wrong medication. He has foreign hallucinations but his drugs treated natural hallucinations. I don’t think his community psychiatric nurse (CPN) listens to him- he does his best but I feel doesn’t truly act on what my son says. I think that if he was on the night medication he would lead a much fuller life; he doesn’t go out much now because the voices he hears are constant. I think the drugs if they were right, could help this. I think he would benefit from having an advocate who could attend his appointments. I also attended Collective Voice in Manchester and spoke to a lady from Patient Opinion. I enjoyed the day and thought it was nice to see so many people who wanted to make mental health care better for everyone. I enjoyed the food but the workshop being on different floors was difficult for me as I am elderly and it takes me a while to get up and down stairs. Unfortunately lifts were not in use because of the power cut.

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Response from Mick McKeown, Principal Lecturer in Mental Health, University of Central Lancashire

Thank you for your post. My name is Mick McKeown and I help to support the Collective Voice initiative. I am really glad that you enjoyed the day and appreciate that you have taken the time to respond through Patient Opinion. On behalf of the event's organisers can I apologise for the fact that you were inconvenienced by the effects of the power cut on the day. I must say that this came out of the blue for us too and we hope it did not spoil things too much. For future events, where we can, we will be looking to book venues that can accomodate large numbers of people at ground floor level.

You raise some interesting points about mental health services. These are just the sort of thing that both Collective Voice and Patient Opinion are looking for to help us influence the future direction of services. The fact that for many service users staff give the appearance of not listening, or not acting upon what people say, is disappointing. Around this you also state your view that the relative lack of effectiveness of your son's medication in minimising his voices. You suggest that he could be helped by an advocate, who could assist in persuading your son's care team to be more receptive to the idea of him having a direct say in decision making about his care, and prescribing in particular. An advocate is a very good way of achieving this at an individual level. We hope that, over time, Collective Voice becomes effective at taking forward these and similar issues at a strategic level in the region. This may involve debating the way in which the work of CPNs might be better organised to give them more time to spend with individual's and hence more time to listen.

One suggestion that came from the floor at the Manchester event was for Collective Voice to help put together a directory of groups in the region who support service user and carer involvement. Advocacy could very well be added to this list. I would expect such a directory to include local 'hearing voices network' groups. This may be something that your son might be interested in.

Thanks again for your post. May I take this opportunity to encourage you and other vistors to Patient Opinion to continue to have a conversation with Collective Voice via these posts.

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