"My sons experience of paranoid Schizophrenia"

About: Collective Voice: North West Standing Conference Mersey Care NHS Trust / Adult mental health Mersey Care NHS Trust / Inpatient mental health care

(as a relative),

My son, the patient, would not agree with me on anything that I write here. He is presently in hospital suffering with paranoid Schizophrenia. He does not look on himself as mentally ill, when ill.

My family and I noticed a change in his personality and behaviour in the 80’s. He began to seriously deteriorate in late ’06. I spoke to a support worker, a CPN and all the people who knew him over a period of a year. I hoped he could be treated in the community avoiding a hospital admission but this became increasingly difficult.

He was admitted to Broadoak, Liverpool in March 2009, under a section 2. The care he received as very good I felt, he was well attended to and generally looked after. He was discharged far too early and after a terrible couple of months he was re-admitted under a section 3 recently.

My son can be very challenging and aggressive. The best way for me to describe him when he is ill is far from himself. He has been violent on occasion, he is demanding and difficult. When well he is able to take care of himself, communicate and engage with his family. When ill, he turns up on my doorstep demanding food and attention, he upsets his sister and brothers and it is very hard to please him.

When discharged from hospital in March, he went to live in self-contained flats with on site psychiatric support. They have a policy whereby they visit every 24 hours, if my son is out or does not answer they post a note through his door requesting that he call them to let them know he is ok. The next day, if he has not called, they try again and they leave another note advising him to contact them and informing him that they will enter his flat with their key the following day. My son calls them at this point, tells them he is fine and the cycle continues.

They know that he is probably not ok but tell me they must respect his human rights and privacy. I understand this but he is not capable of caring for himself properly when ill. He masks his problems and is very good at deceiving people. Throughout June I had heard from him very little and knew that things were not right. I persuaded his CPN and social worker to accompany me to his flat and used my key to let myself in. I knew the help at his flats couldn’t do this but as his mother, I could. I let myself in and saw the extent to which he was not looking after himself. He was living in only one room of the flat, it was dark and untidy, he had lost weight and looked very unwell. He was sectioned that day (section 3) and has been in hospital since.

While I recognise that he has human rights and these should be respected, I believe that care in the community has to mean just that. If he is not even being seen by any psychiatric help (because of refusal, not because the help isn’t available) then he isn’t really receiving ‘care in the community’. He is simply existing in the community with deteriorating health and until it gets to a very critical stage, no one intervenes. It is so difficult to help someone who has no interest in helping themselves and when ill, are so detached from who they truly are.

As I said, I have largely been impressed with how my son has been cared for in hospital but would prefer him to be properly cared for in the community. It is so hard to know what is best for him. A secure setting would bring on suicidal thoughts in him, this would not be for the first time.

When my son was released from hospital the last time onto a voluntary care order, he was very badly prepared (he did not have his medication with him) and no one from the hospital called to let us know he was released. I returned home from work to find him on my doorstep, harassing his sister and making a fuss. I let him in and he was demanding food and being very intimidating. It would have been very helpful to have a warning that he was due back.

We have written to complain about this and have been called to a meeting at the hospital to discuss his care plan, which we appreciated.

The major problem we have found is that there is very little continuity of care. My son’s community CPN and support staff have known him for years and are well-versed with his case. When he is admitted into hospital, he is seen by psychiatrists new to his case and there is little, if any, communication between the care in the community and the staff in hospital. There seems to have been a serious lack of partnership working in our case and it has made things so difficult.

My sons medication has now been increased, to two doses a day and this seems to help with his psychosis but it causes dribbling and a decrease in libido, as well as other side effects. He has a very poor social life and I believe that he could be encouraged by his carers to engage more with society.

If my son is cared for in the community, he simply refuses the help and deteriorates. In hospital, he receives good care but barely engages with society.

I attended the standing conference in Liverpool last week to see what support was available to my son and to discuss my son’s experiences of mental health services over the past 20 years.

The violinist at the beginning of the day was beautiful, it was lovely to come into music. The tea, coffee and facilities were excellent and the Marriot staff were helpful and attentive.

I felt that we were talked ‘at’ rather than ‘to’ for the majority of the day which was frustrating. The best part of the day was the afternoon workshops which everyone seemed to enjoy. It was very useful to speak in an environment where you felt others like you had experienced the same things.

From our group, we fed back to the larger group that we would like an increase in education. I actually put forward this idea but my point was lost somewhere along the line. I was asking for more education and training for me. I would like to be more expert in managing my son’s behaviour and know that people could help me with this, I am just not sure who.

I thought the staff on the day did their best with a difficult task, I just think everyone would have liked more time to talk and contribute.

Just a last thought, I wonder if instead of queuing for lunch, a selection of sandwiches could be placed on the tables and then be replenished. This is just a small note.

I hope my son can be released from hospital and receive more thorough care in the community. I would like to see his quality of life improve and his opportunities in life broaden.

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Response from

We are very concerned to ensure that service users receive the standard of care that supports their independence and opportunity to lead a 'useful' life in the community and to balance this with interventions designed to maintain the safety and wellbeing of the service user and their families. This experience has clearly been far from what we want to offer service users and carers and I will arrange to investigate further to see what improvements we need to make to address this.

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

Thanks for your views on the standing conference in Liverpool. My name is Mick McKeown and I work at the university of Central Lancashire. My university and Rethink are organising the standing conferences on behalf of the North West Mental Health Improvement Programme. There will be a series of events like the Liverpool one throughout the next 14 months or so, in different places across the region. The next will take place in Manchester on the 12th October.

We are also developing a website for people to get in touch and express their views at any time, or to consult on specific points between conference events. This standing conference website will be linked to the Patient Opinion website. One of the team will respond regularly to posts, here at patient opinion and on our own site when it is ready.

In response to your views on the Liverpool event, we are really glad that you enjoyed the day. We certainly did too. You make a good point that the workshop activity is what you and other people valued most. You are not the only person who has given us this feedback, and we hope to address it in the programme for the next event at Manchester, and future events through the region. we also hope that the web site will enable people to develop ideas and themes at greater length and depth.

There will always be the need to include information giving at events such as these, and this is something that people have also asked for in relation to different topics. There has also been a call for key individuals to be invited and face questioning from the audience. Hopefully, we will get the balance right between the different forms of information exchange and workshop activity.

We will add your call for provision of education nad training for carers to assist them in their caring role to the list of issues to be raised with MHIP.

We received a number of complaints about the catering on the day and would like to apologise. We are looking in to how we can improve this for future events and will certainly take your suggestion for sandwiches on the tables into consideration. We will have to organise catering in liaison with the staff at the particular venues we book for future events. Hopefully this aspect of the conferences will improve.

Your hopes for your son's quality of life and broadening of opportunities are movingly expressed. I'm sure that you are not alone in this. We sincerely hope that the standing conference process will grow and develop and become a useful way in which people like yourself can begin to have a real and meaningful say in the strategic development of future services to meet these aspirations.

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