Giving up just isn’t an option…

My brother has now been on the section for 5 ½ months and he continues to be very unwell.  He is very manic and overly busy, he also has some really firm ideas that to his family seem irrational and untrue and this just isn’t how he thinks and acts when he is well.  My involvement with him and the staff around him has taken its toll on our relationship and I really don’t think he likes me very much at the moment and he does not trust me as much as he did.  Despite this he does still keep seeing me and letting me go to the ward reviews.  I have been trying to visit at least twice a month, but I don’t know how some people cope.  I am lucky I only work 4 days and can be flexible about when I take my day off.  Also I can afford the train fares which are usually about £90 a trip.  I can’t imagine what I would do in other circumstances.Also it is so great that he doesn’t just have me. My mom, my two brothers, my partner and my sister-in-law all visit him as well.   We all spend hours talking about him, worrying about him, trying to think of solutions and trying to improve things.  So, although he might think that we do not understand him, and although we make him angry a lot of the time (e.g. not giving him money for drink when his has all gone – again!), I can honestly say that he can not accuse us of not caring about him.  He can not accuse us of not at least trying to help, although he may say we are no good at it!  

But it gets hard when everything seems so negative, when every time you talk to him it feels like he wants to argue or acts like you are challenging him.  It’s hard when he seems to be always testing you and trying to hurt you.  It’s hard to be called stupid by him and it’s hard to hear him criticising the rest of my family.  It is also complicated by his obsession with one person, everything he does and thinks revolves around them.  To complicate things even further this person has a chaotic lifestyle and we believe (not just us the whole “care” team) that this person is taking advantage of him (e.g. taking benefits, getting him to take out loans for her etc).  Most of all its hard to see him unwell and in such a frustrating position.

But I don’t think that there is any of this that I couldn’t handle if I felt that he was getting the best care and that we were all being more supported. Because much, much harder than dealing with all of these relationship and emotional issues is having to deal with the issues caused by the health professionals and the systematic problems that we face regularly.     

I think I can summarise these issues, they are:

• •   poor communication
• lack of co-ordination
• lack of responsibility
• lack of information
• challenging staff attitudes
• indifference
• lack of therapeutic relationships and activities  

I started to write one recent incident around overnight leave that seemed to highlight all of this but it was just way to long for a blog so instead I will just try to illustrate what I mean with a few examples.  In the last review my bother’s advocate and MIND Worker were told the wrong time and missed the review.  After 5 ½ month no one from the whole team had liaised with the supported housing staff and overnight leave was granted without them even being told, let alone involved.  A staff member mistook my brother’s flatmate (another person using mental health services) for housing staff over the phone and assumed that just telling him at 5 pm that my bother would be home that evening, for his first overnight stay, was enough.  It has been three weeks since my brothers care co-ordinator (or any representative from the “assertive” outreach team) has been to a review.  In the last review (after a 5 month admission) there were only three staff (a locum psychiatrist, a ward nurse and a junior doctor), my brother and I, none of them knew about my brothers living arrangements, they thought he was in an independent flat.   The ward staff started telling my brother he was “as well as he could be” even though no one in his immediate care team agreed with that.  Staff report back that the leave during the day is going well – my brother is lending money from people in the town, he took out another loan to give away, he is drinking, his benefit money is gone in two days, he visits his home and flatmate unannounced with people unknown to him, he turns up at a family member’s door demanded money for a taxi bill.  This is all just the last three weeks, the list could go on.

Through out the five months I have tried to improve things.  I write to the psychiatrist regularly via email.  I have spoken to the community team staff.  I have been regularly to reviews.  I have spoken to the ward manager.  I have talked to my brother.  I have tried writing to credit card companies with a psychiatrist letter.  I have spoken to the benefits agencies.  It was me that finally got in touch with the housing staff, asking the to come to a review and get involved more (despite several attempts over 5 months by me to get the ward and community staff to do this).  This is just my actions, my other family members have also been involved in things.  

But to be honest it started to feel that there was just nothing I (we) could do to improve the care or nothing we could do to help him get better.  We were starting to think that we should just back away and just be visitors and nothing more.  My brother didn’t want us involved in anything and the majority of staff didn't seem to want us. The only thing I felt we had to cling to was the fact that his psychiatrist did seem to value our input and did seem to be trying to build up a picture of my brother.  However he seemed in most cases as ineffectual in the day-to-day care as we were.  

So should we just give up ….

They have decided to extend my brother section – we weren’t invited to the meeting nor we asked for any input.  The psychiatrist has decided to change the anti-psychotic medication (from the one he has been on for over 20 years).  Giving up really is not an option.  We all care for my brother, we like him, we think he is a kind, generous, capable and funny person (well most of the time).  We want him to get the best care, we want him to be treated well and we want to make sure that he is given the best chance at recovery.  So we have to go on, don’t we?

I’m going to spend less time worrying about the some of the chaos and debts caused by my brother’s behaviour and more time just trying to improve the communication and care.  I have decided to challenge the review process, to try to make it the proper focal point of co-ordination and communication.  I will be asking questions like why can’t there be notes taken, why can’t there be recorded action with names against them, why can’t all of the people involved in my brother’s care be invited in advance and given an written update when they can’t attend.  There are a lot of people involved in my brother’s care - ward staff (including psychiatrist and named nurse), his family, MIND Support Worker, Advocate, Supported Housing Staff, outreach staff (including psychiatrist and staff) - surely between us we can help him recover!