This morning I attended the depot clinic where I get my depixol antipsychotic injection every Wednesday. The nurse I see there has been making me feel bad. One week she ‘forgot’ to close the blinds so people could see me outside. One week she was telling a student nurse that sometimes thin people come to the clinic and she’d need to judge for herself how deep the needle should go, but that she didn’t need to worry about that with me. Last week when she asked how I was feeling and I said I felt low she said, what’s up with you is it the anti-climax after Christmas or are you just not keeping busy enough? This week I told her I was better because I couldn’t be bothered and she said, there, you see, everyone has their ups and downs, that’s life. The most condescending thing you can ever say to a manic depressive.
It’s not just at the depot clinic. I was referred to the Community Restart team a while ago for someone to come and see me to help me get access to local community etc. I said I’d do it but I really didn’t need them to come round. When one of the women got here she immediately started to comment on what a nice house I had, how big it is and what nice possessions and ooh you have a piano and it’s better than my piano and ooh a nice telly. Each time she came round it was the same thing, with a frowning kind of, how can you afford to live like this… as though I should have nothing, I should be living in an untidy house in disrepair, my house should be full of rubbish, I should be swimming around in my own filth. I really should empty the bins out all over the floor before they arrive. I felt as though I had to justify myself, we won the telly in a fantasy football competition etc. Of course, I’m mentally ill, mentally ill people should have nothing, should not have better than what anyone else has got, should fail, should be bullied into attending inappropriate community events and should be suspected and should be the underclass. Should be phoned up and checked up on to make them feel completely useless.
I feel degraded. I feel like the system has swallowed me up and had its fill of me and is about to spit me back out. There’s a pyramid system of allocating care now, the more stable you are the further up the pyramid you go until you go back to being under GP care. This is wrong, people with bipolar can go from being stable to manic in days, not weeks, can dip and keep dipping to the point of suicidal thoughts and those with a history of them will experience them very early on in onset of a depressive or mixed episode. This isn’t something you can go to your gp about. My care-coordinator must have hundreds of people in her care and admits that a great many are scheming their way to benefits and aren’t ill, and a lot don’t really warrant a care coordinator. So people are getting pushed out of the system. At the moment I am prone to thinking, well I don’t really need their input at the moment. But the nature of my illness is that it is unpredictable at times, erratic and severe. I don’t want to have to work my way back through the system the next time I need its support, which is to be honest, almost a certainty. And people who don’t know will say if you expect something to happen then it will. People with bipolar know that you don’t get off scot free just because you take a load of pills and drugs that paralyse your system and do things to your brain that no-one’s really sure of. Some people are lucky, but most aren’t. Even medicated, moods break through and stress and life events can set the rollercoaster rolling again at the drop of a hat. It is almost impossible to drug someone and ‘level them out,’ most people end up having to function below ‘normal’ in a mild depression. There are people more vulnerable than me that won’t get the right help, because they don’t realise when they’re ill, because they come off and on medication and don’t access treatment because there is no-one there to help them do it or tell them when their behaviour becomes a problem. There is no easy solution. Continuity of care is a must. It is possible to get on the right track but it has taken me fifteen years to reach a period of reasonable stability. A lot of people don’t survive that long. People with mental health problems are stigmatised and are degraded and let down and I’m sure it is easier to get away with than most other branches of medicine.
But I have to be grateful for the time being and suck it up and put up with this stuff. I have been feeling low, and it has been hard for me, but I’m not edging toward any extreme at the moment. I can feel it when it’s really hitting, and it normally collapses in a matter of days when I’m heading for a major depression. I know a lot of people in the profession desperately want to help, but there’s so many government targets that have to be met and real care is becoming so scarce. There aren’t enough hospital beds when people really need them, that is unequivocally true. The Crisis Team was an attempt at saving money but in my experience and from what I hear of other peoples’ experience, it can’t replace hospital admission and in too many cases lets the patient down. I can’t count how many times I felt let down by them. People not turning up, people not wanting to get involved after a self discharge, the phone ringing and ringing and no-one there to pick up, or someone at five in the morning when you’re high as a kite telling you that anyone can live off two hours sleep a night or to just go back to bed. They can’t intervene successfully.
I have had good, positive social workers/CPNs and I have had appalling ones. I have had care and support and I have been left reeling from bad experiences. I have so many things to complain about that I barely have the will to even start. Unfortunately for professionals who are doing their job, these bad experiences often far outweigh the positives. When I think about complaining, or voicing my opinion like this, it is like coming up against a giant in a boxing ring…