Care in the community Part 3

Thursday 24th

Having spoken to a good friend who used to be in mental health services as a CPN and is now a social worker, it looks like the way forward and out of this mess is to get an advocate. Advocacy services basically can represent you and liaise on your behalf, independently of mental health services, to make sure you get the care you need (if, like me, you're experiencing difficulties). At this moment in time, I have been given two options:
1. To continue with unsatisfactory care from a team I don't trust or get on with
2. To discharge myself from mental health services.

I don't agree with either of these options.

So today, we went to find an advocate. We took a trip into Brighton and back, and additionally have called 14 'advocacy service providers' throughout Sussex. I've spoken to Rethink and Mind. I've spoken to the Advocacy Resource Service. I've spoken to really helpful people, who for various reasons can't help me, and I've spoken to lots of answer machines.
However, after about 9 hours of searching, we finally got some professional advice and are on the right track. We now await a callback from someone next week.

We are both completely fried, wired and exhausted by all this unnecessary stress. It appears to me that all of this has escalated beyond control, and is causing me to go high. This isn't good for a bipolar sufferer, as a high is always followed by a crash and a depression. Relapse the professionals call it. Relapse caused by stress, caused by a community mental health team... my very own carers!

Not much more to say. Draw your own conclusions. More to follow...

Care in the community Part 2

More than once, today, I've been given the option of discharging myself from mental health services, but that would be too easy.... for them.

10 a.m., still no calls, so my partner calls the CMHT (Community Mental Health Team), vocalising her concern that no-one has returned my calls. My new care co-ordinator, Steve, isn't in today she's told, but will be tracked down and asked to call me.

A call from my psychiatrist at midday. She states that she's calling instead of Steve, as she knows me better ( but I smell a 'rat' already). Her call confirms what I already knew; that my CPN hadn't been advised 8 months ago that I didn't require his services anymore. She admitted that she had failed to communicate to me some major aspects of my care, such as the fact that my CPN had handed in his notice and that they were waiting for his replacement before assigning me a new care co-ordinator. It would appear that they failed to communicate this to him too.

Although She apologised for inadequate care, I feel like any relationship of trust has been destroyed. I advise her that I am still dis-satisfied with the 'service' I receive and don't know what my options are for the future. She advises that I can continue seeing the team and draw up a new care plan with them, or discharge myself from mental health services. Either way, I can discuss this next Tuesday, when I have an appointment with her (at which my new care co-ordinator Steve will be present). I request that Steve still calls me, as I'd like to find out what was raised at Monday's meeting by him, on my behalf.

Steve calls. In his opinion, my psychiatrists apology represents sincerity, therefore without doubt restoring any trust that had been lost. I disagree. We disagree. We go around in circles for 20 minutes. I ask him for help in trying to resolve a situation which is escalating out of control and which is causing me great stress and anxiety. I remind him I am the patient with a mental Health problem and he is supposed to be my new carer. He advises me that 'the world is not perfect'. I cannot make an appointment to see him, to discuss ANY issues, as He's " not professionally involved in my care yet." I tell him I'm frustrated. He advises that I complain to the Community Mental Health Team Manager. I state I don't want to complain, I just need to clarify what care I am entitled to. He advises me that the only way forward is to speak to the Team Manager.

My partner calls the Team Manager. He won't speak to her, but she can write in raising any issues she has. Despite being exhausted by all these contradictory conversations, where I feel I am not being listened to, I speak to him and outline events from last March up until today. He also apologises and says "it is clear that our communications haven't been tight." He advises that I could discharge myself back into the care of my GP, although the best way forward would be to meet with my psychiatrist and new care co-ordinator next Tuesday and develop a new care plan based on what I want.

I just want to be heard.

So I am left with a psychiatrist I no longer trust and a new care co-ordinator who doesn't listen to me and so far hasn't helped me.... in fact, he's the reason this whole stressful saga started!

More to follow, I'm sure....

Care in the community Part One

And so my faith in Mental Health Services reaches zero.

After being passed from pillar to post for the last 5 years, seeing umpteen 'health professionals', I am finally brought to my knees by a system that is a shambles.

Last March (10 months ago) I suffered a depressive episode, which resulted in the proposal of a care plan to back my partner and myself up in our daily battle to cope with my bipolar disorder. It would contain vital information about my illness,Mental Health Team, GP, carers, next of kin and medication, in case of emergency; it would contain telephone numbers and names of people we could contact for support; it would be held together by a 6 month plan co-ordinated by a Community Psychiatric Nurse (CPN). I didn't click with my CPN for various reasons, so after 3 meetings requested my psychiatrist pass my care plan onto someone else to co-ordinate (it was now May and my care plan was still incomplete). No problem, I was told, we'll take care of it.

December 2007. Two weeks before Christmas, a time that is stressful for anyone, in a season when I usually hit my biggest lows. Still no care plan co-ordinator, despite requesting the matter be dealt with at every 6 weekly appointment with my psychiatrist. Don't worry, she says, I'll assign your care to your current Social Worker, to which I am relieved, as I get on well with her and trust her.

I'm still being hounded by my old CPN to 'catch up' and 'do our 6 monthly review', and so embarassingly have to explain to him that I'd requested stop seeing him in May. The poor guy didn't have a clue, He hadn't been informed. I'm left wondering if anyone knows what is going on???

Friday 18th January, 2008. 5 p.m. I receive a call from 'Steve', my new care co-ordinator.... Who? Well, he's in charge of my care now, so he says and wants to meet up to 'touch base'. He's never heard of my social worker. He doesn't have the password to access my files on the computer system. I'm not sure he knows I'm bipolar, what medication I'm on, or anything at all about me. When I explain that I'm totally dis-satisfied with the 'care' I'm receiving and give him details of my whole care-plan fiasco, he gives me the option of discharging myself from mental health services. I advise him to speak to my psychiatrist before taking any further action as he doesn't know my 'case', although I also advise him that I am losing more and more faith in the system and now don't really trust anyone, not even my psychiatrist. He says he's 'hearing me' and will raise all of these concerns at a meeting between all staff at my Community Mental Health Centre (CMHC) on Monday, and call me to 'take things forward'.

Monday 21 January. No calls. Called the CMHC twice and left messages for him at 4 p.m. and 4.55 p.m. On the second call I'm advised it is unlikely I will get a call back that day, as the receptionist is finishing work at 5 p.m., and so is not likely to see Steve to give Him the messages. wThis leaves me wondering what the f**king point is of having a care plan and a co-ordinator, if you can't even get a message to them let alone speak to them???!!!

AND THEY WONDER WHY PEOPLE KILL THEMSELVES.

They're coming to take me away...

The world is plastic. People are fake. Very few care. 'Western Society' treats it's citizens like shit and wonders why they kill themselves, other people or both.

I've been reading 'Electroboy' by Andy Behrman and 'The Legendary Joe Meek' by John Repsch. If you've never heard of them, Electroboy is Andy Behrmans memoir of mania, and Joe Meek was the UK's first great, genius pop producer, read about him here. Rumour has it there's a film being made to mark the 40th Anniversary of his death, starring Rhys Ifans and Stephen Fry.
Since Christmas I've additionally been stuffing my brain with knowledge from 'Schotts original miscellany' (everyone should have a copy) and 'Sullivans music trivia'. 'Things the Grandchildren should know' by Mark Oliver Everett is in the post...

Musically, Eels 'Shootenanny' hasn't been off, or Mark Oliver Everett's 'Levity' soundtrack. Been re-discovering KLF's 'The White Room', and Radiohead's 'OK Computer'. Haven't got around to giving my other xmas albums a proper listen yet.

I heard 'They're coming to take me away Ha-Haaa' by Napoleon XIV on Friday, which made me laugh as i'd just had a call from mental health services. This is a long story, the basics of which are that I'm being passed from pillar to post again. This time, however, I'm not standing for it, and told them so. I now await the repercussions of a staff meeting about me on Monday....They're coming to take me away!