"Not everyone with SchizoAffective Disorder is the same"

About: Collective Voice: North West Standing Conference Lancashire Care NHS Foundation Trust / Adult mental health

(as a relative),

I attended the Collective Voice event in Manchester in October and was really pleased to be able to contribute to such a big event. As the parent of a young man with mental health problems, I am part of many groups where I speak about my experiences and am grateful for the chance to contribute to bigger objectives for the whole region. My son was diagnosed as having bipolar at 11yrs old which was re-diagnosed as schizo-affective disorder by 13yrs. It took until this time for him to get an official diagnosis of Autism aswell but we'd known for years. He was sectioned and admitted to a childrens specialist unit (McGuinness Unit) at Prestwich. This was a very difficult time for him and also for me as his mum.

He is currently on section at Guild Lodge medium secure unit in Preston. He has been there for 7 months and his section is due to be extended. He is supposed to have access to a new activity every week so he asked 3 weeks ago if he could go to the community centre on site and was told he would be accompanied for half an hour every Saturday and Sunday. He has not been once yet because for the first 2 weeks it was not written up and most recently there has been no one to take him. That is really hard for him to understand. As someone with Autism (and significant mental health problems) when he is told that he can do something it is important that he then can. The staff do not seem to understand how much this could disrupt and upset him. He was told he could access certain aspects of the OT support but has now been told by the Aspergers group that these activities are not age-appropriate.

One positive thing I have to mention is that the Aspergers centre in Sheffield have told my son that he can visit the Lonsdale unit to get used to the staff and ward. This should mean that moves are much more smooth and that the massive change he has to get used to when he has a tranisition is made more manageable for him.

I feel that staff try their best to communicate with him in his way but as it's so secure, its difficult. He is very much an individual and has his own way of expressing what he needs and wants. A more specialised unit like St Andrews in Birmingham might have been able to dedicate a little more time to understanding him but it would have cost a lot of money for him to go there and it was just too much for us.

The unit he is on now cope very well with his mental health issues, they have stabilised him for the first time in 10 years which is great. This is because they are so highly specialised in mental health. But this isn't entirely positive because it feels like they do not manage his learning difficulties so well. Individuals have cared for him better than others I'd say.

I am looking forward to his move to the Lonsdale unit and I am optimistic about what they will be able to do for him. I would like staff to take him out more often and involve him in a variety of activities - which I know is difficult but is so important.

Staff seem to have listened to us much more now than they ever did before he was sectioned - it feels like everything in mental health is reactive rather than preventative. It took 13yrs for him to have a conclusive diagnosis but I think more could have been done to help him and prevent distress in the years leading up to this. I feel like if people had worked preventatively and proactively with my son he'd have had a better quality of life and we'd have avoided him going into hospital and being sectioned. At one point servicers were 'arguing' over who should be responsible for his care - learning difficulties or mental health. I was so worried that he would end up with no sufficient care. Could there not be a better way of working together to provide consistent, good quality care?

I got in touch with Lancashire Care NHS Trust's CE many years ago who I was very impressed with. He organised for a representative to chair meetings between LD and mental health care c-ordinators to help make the transition between child and adult mental health servies more smooth. I have heard so many times of there being a real gap between the two. In the mean time, my son became ill and was admitted so we had no time to plan his admission properly.

I attend carers contact meetings in Burnley and I'm on the carers mental health panel and the LIT. I want to be as involved in his care as I can be.

Overall, his care has been good but inconsistent. Sometimes he has been very well cared for and sometimes not. I have a carer who supports my son and while she has very little qualifications in mental health, no one has ever cared for him in the way she could. It proves to me that looking after someone well isn't about your qualifications or even your experience, it is about being person-centered and motivated to make their life better no matter who they are.

Everyone is different, and that is true of people with mental health problems or learning difficulties as well as those without. Care should always be person-centered.

I will continue to be involved with Collective Voice and I will be interested in seeing how what we are all saying at these events is used.

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

Thank you for this post. My name is Mick McKeown and I help to support the Collective Voice initiative.

Collective Voice is a partnership between Rethink, the mental health charity, and my university. It exists to develop a network of interested service users and carers so that they can have their say about mental health services in the north west. We are particularly intersted in supporting people to have their views heard about strategic developments into the future. Collective Voice has been funded by the North West Mental Health Improvement Programme (MHIP)for 18 months, but our ambition is that it becomes a lively and self-sustaining network into the future.

Your positive views on Collective Voice and your enthusiasm for the event in Manchester is really welcomed by us. We hope that people like yourself will continue to attend the conference events, and encourage others to do so too. There are a series of these planned which will take place at venues across the North West over the coming year. We hope that by rotating the venues there will be at least one conference event taking place near to people's homes, wherever they live in the region.

Colective Voice is more than just these events, though. There is also a process of recruiting representatives underway. These reps will attend important MHIP meetings. They will also begin to develop a role in seeking the views of wider groups of people, so that they can bring them forward at MHIP meetings and Collective Voice conferences. The next round of recruitment for reps will be commencing soon. Details about the next Collective Voice conference event and how to apply to become a rep will be posted soon here at Patient Opinion.

Your personal story about your son's journey through services does a really good job of pointing out how even the best intentioned services can be set up in ways that fail to meet people's needs. This has been complicated in your son's case because of the failure of different branches of the service to join up effectively or address needs that they are not primarily designed to meet. These are the sort of strategic issues that Collective Voice can hopefully get to grips with, and persuade policy makers, commissioners and mental health Trusts to think about solutions. Your views and the views of other posters to Patient Opinion will be fed into Collective Voice.

You also raise the interesting issue of the nature of care, and point out that it isn't always the case that possession of professional qualifications leads to a caring attitude and practices. One of the most important contributions that service users and carers can make to initiatives like Collective Voice is to reinforce simple but profound messages like this to the benefit of health service staff, managers and planners. As somebody who works in the education of health and social care practitioners I recognise the truth of what you say. But I also see the potential for education and training to bring about better outcomes, including having highly qualified professionals who also retain the human dimension of caring. In our university and others we have begun to do a better job of including carers and service users in the training of nurses, social workers and other professionals. This is very much appreciated by the students and we all hope that the insights they gain from people's real lives and experiences of services will stay with them into their careers.

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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