 
Supporting PeopleBipolar diary taken from the bbc Mental Health Awareness Web Pages Seven-day account of the challenges faced by one woman getting to grips with her condition. Connie Perris is in her 40s. Her first mood swings happened at school, but she only got a firm diagnosis of bipolar disorder seven years ago. Day one: getting a diagnosis My slide into severe and enduring mental illness was long and slow. At school, I had mood swings, sometimes with severe depression and also with periods of much higher mood, but these were put down to growing up and female hormones, and I learnt to live with them. At university, a doctor explained that the mood swings through my teens had been manic depression, but it seemed no more significant than saying that I’d had German measles. As an adult, I experienced milder depressions, but just took it as being part of the experience of doing a pressurised job; and I fought back against the depression by becoming very busy, without any sense that this might be a form of hypomania, or raised mood. Then, in my 30s, I experienced a series of unpleasant life events. The end of a serious relationship, neighbours from hell, office politics, being assaulted and physical health problems all took their toll, and I began to crumble. To begin with, talking with a therapist helped, but then I collapsed into major mood swings and psychosis. And so began my life in the psychiatric system with bipolar affective disorder. In the ten years since I went to see a doctor about my mental health problems, I have had therapy, medication, hospital stays, stays in respite care, home visits, and many outpatient appointments with doctors, nurses and social workers, all to help me to survive. I have made several serious suicide attempts, some laughable in their miscalculation of how many pills it would take or how deep to cut a wrist. With others, it was a miracle I survived. And I have acquired labels. I’m bipolar, I’m manic depressive, sometimes I’m psychotic, I have severe and enduring mental illness, I had a breakdown/have breakdowns. There are others. I’m a patient, a client, a mental health service user. Mental health, or mental distress, is cluttered up with labels, as we try to define what the issues are and what they mean for us and our relationships with those who help us to deal with them. For my taste, the best label to stick on a person is the label they themselves prefer: I’m comfortable with a range of labels, except, for some reason, patient. But there is no getting away from the stigma and friction caused by labels. Fortunately, bipolar is not too bad a label to have because people associate it with creativity and intelligence, and much has been written on the subject on the internet and in books. Psychotic, on the other hand, is a word often best avoided, because people often aren’t sure what it means. I’ll tell you later about what it means for me, as well as how depression and mania affect me. In the meantime, I’m just me. After years of illness, the future is uncertain, and the climb up towards a healthy me is also long and slow, but one I’m making a step at a time. Day two: mania A better day, a few enthusiastic thoughts, and the anxiety sets in: am I going manic? Different people have different experiences of mania. There is the milder end of the spectrum, or hypomania, then there is the full-blown mania. When hypomanic, I have gone for long periods on little sleep, been enormously productive and filled in so much of my time with activity that I didn't need an easy chair to sit in at home because I never had time to sit in it. I have concurrently held down a full-time job, been in the Territorial Army, practised martial arts, attended evening classes, been a union rep and still found time in my life for community activities. The trouble is that things don't stay like that. To begin with, multitasking becomes easier, but then by the time I reach the stage of watching the television, listening to Radio 4, listening to music, reading a couple of websites and holding half a dozen online conversations all at the same time, it begins to sink in that I've lost my productivity and become chaotic and dysfunctional. Mania creeps up on me like that. I become focused on the wrong things, like when I was producing an assignment on a postgraduate course and concentrated more on finding 14 different colours of paper for the different chapters than on finishing the text. Then there's the shopping. I’m the sort of person who instinctively stocks up on the basics at intervals, and we all enjoy the odd bit of retail therapy, but the point at which I go to a supermarket with the intention of buying one loaf of bread and come out with five trolleys full of shopping, things have gone too far. My mania can also be mixed with depression, giving me the negativity of the depression and the energy of the mania. It's so very easy in this state to do something I may regret. My moods can also cycle very rapidly between mania and depression, which is very stressful and exhausting for me to live with, and I am sure difficult for those around me. That isn't to say that there isn’t a positive side to mania. I have danced up the middle of the street with pure joy, and stared with wonder at a world that is so bright, so clear, so vivid. But this is outweighed by the negative side of it. I exercise poor judgement in my decisions and my usual obsessive planning gives way to impulsiveness. I lack consideration for others and become angry. I'm sure that I am right and everyone else is wrong, and I’m going to make sure that they know it, because they are all so infuriatingly stupid. Then there's the crash into depression, with a despair that I am not so capable and wonderful. I have made another mess of my life and now I have to live with the consequences. In my next entry, I'll tell you more about how depression affects me. Day three: depression In recent years, I have spent much of my time depressed. Depression can be such a very difficult thing to describe. We all have our ups and our downs, our good days and our bad days, but severe, chronic depression is something different. It's often easier to explain in terms of what it isn't. It's not seeing the colours and sounds in the world around you, it's not feeling the breeze on your face or the spattering of rain on your hair. It's not finding pleasure or interest in things. It's not finding the motive or the meaning to do anything, even to get out of bed. There's the urge not to keep going. At it's most benign, there's no more than an apathy and weariness that makes it difficult to go about life's daily business; and at its worst, a feeling of meaningless, of futility, of pain. Your view is that to stay on this earth is not just a waste of time but a burden on others and a degree of suffering that you wouldn't let your pet endure. It is all too easy to try to do something about it. Surviving the attempt can seem like yet another failure, leading to more despair. Thinking becomes distorted. Negative thoughts keep popping up, and simply deciding to think positively isn't enough - you have to fight each negative thought one by one until you become completely exhausted in the endeavour. There's the pain that goes with it. It's worse than any physical pain I have experienced. Imagine toothache or a broken bone or a migraine spread throughout your body. You know it's in your head, but it's still very real, and you can't get away from it. I also find myself either agitated or slowed down. When agitated, I can pace around my flat or around the streets for hours; when slowed down, I can grind to a complete halt, just sitting or standing wherever I happen to be, be it for minutes or hours. I find depression can be very lonely and the pain of it almost unbearable. I pour out my distress to my family, to my friends, to the mental health team. If there is no one else there to talk to, I go online and pour it all out on a bulletin board, or call a telephone help line such as the Samaritans or Saneline. I try to do something, however little, try to make the effort to wash and dress and go for a walk every day, which helps me to feel in control of my life. In my bleakest moments, I often look at flowers, at the fragile poppies that grow through the cracks in the unfriendly concrete, surviving in a seemingly impossible environment. Each depressed day, I hope to survive like them and see the sunshine again. But to survive this, I also have to deal with the psychosis I get with the depression. I’ll tell you more about that next time. Day four: psychosis I’m sitting quietly at my computer and the odd word pops into my head. Just random thoughts in the quiet. But I’m uncomfortable, because there’s a fine line between what is normal for me and what is a sign that something’s amiss. I’ve had the classic sort of voices, just behind my left shoulder and sounding totally real, but more often when I’m unwell my head just seems to get rather crowded. This is rather tiresome. For example, I can imagine a conversation with someone. Surely we all do that. I can get involved in my part of the conversation. So far so good. I can forget the other person isn’t really there. Um, not so good. They can sound very real and hold their own in the conversation. Quick, give me the pills before I wear myself out completely arguing for hours with them. And working out whether the people in my head are really there isn’t the only problem I have. Making sense of what people actually say can be a problem, too. When I’m not well, I can take things very literally. For example, one day in a benefits office, a member of staff said “I’ll strangle you!” I took it literally, screamed for help and hid under a table. I calmed down after someone had explained to me that she didn’t mean it literally and that in any case she was saying it to her colleague, who was nagging her to go for lunch, but I’ve been reluctant to go in benefit offices of any sort since. There’s also the paranoid thinking. Again, this is on a spectrum from being a bit suspicious or worried, through to being convinced that there is a specific plot against me. When it’s mixed with mania it becomes exhausting, as everything seems to be interconnected and I frantically try to work out who is behind the conspiracy against me. It’s also a very lonely experience. Couple the fear of what others might do to me with a fear of what I might do to myself when depressed, and it feels like there is no escape. In the very depths of this fear, I have spent nights on roadsides and traffic islands in the belief that this was the safest place to be, where nobody, even myself, could hurt me, with so many witnesses driving past. Some of this amounts to psychosis, and some of it doesn’t, but it’s all difficult to deal with. Most of the people I know have no experience of it, including most of my friends with bipolar, and when I meet psychiatrists they never use the word psychotic to describe how I am until afterwards, giving me the feeling at the time that nobody knows what is happening. But I am fortunate that I am one of those who finds that antipsychotic medication and thinking techniques help. I’ll tell you a little more next time about what treatments help me. Day five: treatment I pick up my pill box, tip out my medication into my hand and, with mixed feelings, swallow the pills. I am all too aware that feelings can run very high about medication for mental distress. At the one end of the spectrum are those who think that if we simply took our pills every day, everything would be fine. At the other end are those who say that medication destroys the brain without doing anything positive to help. And I’m stuck in the middle, taking my pills. Pills to calm me down, lift me up, keep me in between, make me sleep. I’ve tried various combinations and I’ve tried not taking them. Maybe they’ll damage my brain, and they also give me side effects such as sleeping during the day and shakiness that can make writing more difficult, but they keep me alive. But it’s not just about pills. I have tried talking therapies. I have had counselling, cognitive behavioural therapy, psychoanalytical therapy, the works. My experience has been that I never get out of it what I hope to, but I don’t like wasting things and with a bit of effort I make sure that I get something out of it. Unfortunately, it has not all been helpful, and I believe that some of it has had a very negative impact on me. I try to manage my mental state, and I try to learn from experience what does or does not help. It makes an enormous amount of difference how much sleep I have and how regularly: when I am unwell my sleep patterns go completely to pot and they can take months to stabilise after a bad episode. Daily exercise helps, although I don’t feel able to cope with the sort of social exercise I used to have before I became so unwell. Many times over the years, I have looked back on the days when I confidently practised martial arts and used a gym and wished I felt well enough and confident enough to do those things again. I self-monitor and watch out for early changes in my mood and thinking, to try to pre-empt the worst of an episode. It can be a bore for everyone else when I’m reacting to relatively small changes in mood. It’s just so terribly difficult to get the balance right between looking after myself and overreacting. But there are no miracle cures for bipolar disorder, so I have to do the best I can with what treatment is available to me, and it does make a big difference to my life. I can’t make it so that I never get ill, but I can make it so that I’m as well as I can be - and that makes the difference between having some quality of life and giving up. But I don’t do all this on my own. Tomorrow, I’ll tell you about some of the people I turn to for help. Day six: support One of the things about severe mental illness is the need for help from others. There are times when I resent this, because I value my autonomy highly, but at the same time I think other people are what makes life worth living. There are the professionals. When we are fragile and the essence of ourselves is at its most vulnerable, we want professionals to make the decisions that we would be making if we were well enough and well-enough informed to make; and when we are still distressed but well enough to make decisions, we want them to respect those decisions. But however well-qualified, experienced and kind they may be, they’re not us. They may do or say things that we wouldn’t want. We may expect too much of them. When I turn up to see my psychiatrist in a mixed manic and depressed state, desperate for help but ready to bite his head off at everything he says, telling him that I have tried literally dozens of medications over the years and several types of therapy, he can adjust my medication a little more, arrange some extra visits from my nurse, or maybe refer me for yet more therapy, and he can offer some kind words, but he has no miracle cure. I see my community psychiatric nurse (CPN) at intervals, varying according to how well I am, and when I am at my worst, nurses and others from the local home treatment team visit me at home. It generally helps to have experienced professionals there to talk me through the rough patches, although there comes a point in my misery where I cannot find the words to express how I am, so they fill the gaps and I am left feeling that I have been talked at, not with. Yet without the help of nurses I would not be alive today. There are the therapists. Some I have been able to talk to frankly, some I have not. They have varied in their levels of empathy and in how far they listened to what I wanted to say. Talking therapies can help, but they are not a substitute for other support. There are the telephone helplines. Each has it’s own unique style, each has contributed to keeping me alive, and each has infuriated me at the point at which someone at the other end has assumed that what I want of them is that they should tell me what to do. I don’t. I simply want them to be there for me. There are my friends and family, who give me the love and support I need to feel that life is worth living, especially my parents. Most friends did not want to know when I got really ill, but some stuck by me and I have made new ones. With them, I can look forward to a life worth living. Next time, I’ll tell you more about how I’m trying to do that. Day seven: recovery In previous blogs, I have told you about how bipolar has been for me, but what about life beyond bipolar? None of us can predict what the future holds but I hope that it will be better for me than the bleak prediction of one consultant psychiatrist who told me that eventually I would kill myself, and that it was just a matter of when. I used to hold down a full-time job whilst being busy and active outside work. Now, what once I would have done in my spare time occupies most of my time. Years of illness made basic tasks such as washing, dressing, cooking, shopping for groceries and getting some exercise a major achievement. Simple things have to be re-learnt. I can remember how, after months of being slowed down by severe depression, I tried to work out how to swing my arms when walking at normal speed. Three years ago, I was so ill that I could not string a proper sentence together. Now, I can write this. This improvement is slowly and painstakingly achieved, with setbacks along the way. It is both satisfying to know that I have recovered so far, and frustrating not to have recovered more. Months and years disappear whilst I do very little except survive. Yet somehow, I keep picking myself up and starting over, each time hoping that this time will be the time I recover long term, and each time more determined to enjoy things as they are without letting the likelihood of relapse hang over me. I value time spent with family and friends in a way that I never did before. When I was in work, I took it for granted that I met people every day, but now I have to make an effort or I am alone, so I work on friendship and these friendships keep me going through the bleakest of times. I try to envisage a future in which I can once again earn my own keep. In the past, I did that by holding down two jobs - one as a legal ethics adviser, the other as a Territorial Army soldier. These days, with a relapsing remitting illness, it is difficult to know where to start with getting back on the path to work. There is, of course, the protection of the Disability Discrimination Act should I go into employment, but I would have to be fit enough to do my job with reasonable adjustments. I could try to move towards self-employment, but the benefits system appears not to be geared up towards self-employment or intermittent work. And at the moment, I am not well enough to do more than a few hours a week, at unpredictable times. In the meantime, I sit on some committees and study part time for a masters degree, and I make an effort to enjoy every bird and tree I see, and every moment with family and friends. Thankyou to the bbc for covering this story from the series Secret Life. Mental health: Rights versus risk (From the BBC Health Resources website) Should patients get more rights or more compulsory drug treatment? Many mental health groups say changes to legislation announced on Tuesday should focus on patients' rights. They are worried the government is likely to emphasize public safety because of fears whipped up by the media over killings by community care patients. Groups like the National Schizophrenia Fellowship say the problem has been exaggerated. The reasons for the care failures are complex and require greater investment in community care rather than a draconian approach, they say. BBC News Online looks at some patients who have suffered because of care failures, as well as some recent community care killings which have made the headlines. Diagnosis Denise says she could not understand what was happening to her son Martin when he began avoiding his friends and hiding away in his bed for most of the day. She thought he was lazy. "Nobody told us he was seriously ill." Martin was suffering from a form of schizophrenia marked by lethargy and apathy. Mother and son say they had to fight for years to get him properly diagnosed so he could get the treatment he needed. They then had to fight to get him off older drugs which he says did not help relieve his symptoms much. In another case, a patient called Kevin killed himself by jumping off a high building while in the care of the Lister Hospital in Stevenage, Hertfordshire. He was among seven mentally ill patients who committed suicide at the hospital within a six-month period. A review published in late 1998 was critical of the hospital. Kevin's mother Grace said: "The report says that it would cost too much to provide a proper secure area for patients. How much is my son's life worth? "Kevin could still be alive today if it was not for this tight-fisted approach to community care." Killings Cases of killings by community care patients have won media headlines. Mental health experts say this has resulted in the mentally ill becoming stigmatised further, despite the fact that they are more likely to be a danger to themselves than to others. They argue the killers themselves are often victims of a system which does not give them enough support once they are released from hospital. Psychiatrists say community care is underfunded and there are not enough beds available for people who are in a crisis. But some groups, such as the Zito Trust, set up after the killing of Jonathan Zito by former community care patient Christopher Clunis, want more safeguards for the public as well as greater support for patients. Community care patients who have killed include Michael Folkes, who stabbed 33-year-old Susan Milner to death with scissors in 1994. The attack was similar to one he had carried out the year before. An inquiry found that, if he had been admitted to hospital before both attacks, they could have been prevented. Scissors Folkes was suffering from paranoid schizophrenia and had been released into the community when he stabbed Ms Milner 70 times at his London flat. He had been released from hospital against expert advice on the condition that he continued to take his medicine. He later refused to take injected anti-psychotic drugs and asked to be allowed to administer his own orally taken medicine. Tests after the attack on Ms Milner demonstrated no traces of medication in his body, showing he had stopped taking his medicine. He was convicted of manslaughter in 1995 and was sentenced to be detained indefinitely at Broadmoor. The inquiry team criticised his failure to take his medication as well as a lack of communication between the community care team dealing with his case. Supporting People is a government programme that aims to improve the type and quality of support services provided to vulnerable people. Where you receive a Supporting People service they pay your service provider to provide you with housing-related support to enable you to live independently in the community. Who can access SP services? Services are available for: Who funds Supporting People services? If you are receiving housing benefit then the SP team will cover the costs of the support for you. If you are not receiving housing benefit you may have to cover the cost yourself, but you can apply for a Fairer charging Assessment, which may mean you are still eligible. For more information on charges please contact us and ask for their charges. What is housing-related support? This is the service that your landlord,orsomebody who works for them,such as awarden,a support worker or a floatingsupport provider provides for you to helpyou to remain independent.If you are vulnerable you may be living in aplace where accommodation and supportare part of the overall service — such as asheltered housing scheme,a hostel or arefuge. Alternatively you may be living inyour own home and receive support from anoutside agency.Typical housing-related support services include: All of the services above help you to do thingsyourself rather than have them done for you.Supporting People does not pay for personalcare services such as bathing,laundry orhaving meals prepared. Does my Supporting People Service have to meet certain standards? Under the Supporting People programme, service providers need to make sure that their service meets standards laid down by central government. In order to check these standards are being met, the Supporting People Team reviews services regularly. We will contact you when your service is due to be reviewed, and welcome your involvement in the review. You will be given a leaflet about the reviews which will explain how they work and how you can help. What if I want to make a complaint about my Supporting People Service? If you are unhappy with the service being provided to you, you have a right to complain. In many cases the best person to complain to will be your service provider —they should give you information on how to do this. If you would rather not complain directly to them, you can contact the Supporting People Team. How do we involve people? It is important to us that people who useSupporting People services are given theopportunity to give feedback on servicesand pass on ideas for improvement to us.There are several service user groups that meet to discuss services in Bournemouth,as well as a regular Newsletterproduced by the Team to keep peopleupdated on what ’s happening.We also encourage service users to helpus to review services.To get involvedplease contact the team. Bournemouth Supporting People Team Room 106/ 107 Third Floor Town Hall Bourne Avenue Bournemouth BH2 6DY Telephone 01202 458929 Email: supporting.people@bournemouth.gov.uk The Disability Equality Duty for the Public Sector What is it? From December 2006 The Disability Discrimination Act (DDA) 1995 will be amended to place a duty on all public bodies to promote disability equality. This will affect all public bodies - from local councils to government departments, from universities to hospitals. The Disability Equality Duty will require the public sector to actively promote disability equality, and is similar to the duty to promote race equality under the Race Relations (Amendment) Act. This is a positive duty which builds in disability equality at the beginning of the process, rather than make adjustments at the end. It will bring about a shift from a legal framework which relies on individual disabled people complaining about discrimination to one in which the public sector becomes a proactive agent of change. How will it operate? The Act sets out what is known as the General Duty. This means they will all have to have due regard to the need to eliminate unlawful discrimination and promote equal opportunities for disabled people. They will also need to consider the elimination of harassment of disabled people, promotion of positive attitudes and the need to encourage the participation of disabled people in public life. The Regulations will give key public bodies a Specific Duty which will define for them a framework to use to meet the General Duty. The main element of this will be the requirement to produce a Disability Equality Scheme. There will be a full list of bodies who will have the specific duty and will be required to produce a Disability Equality Scheme. This list will be produced by Government but a draft version is in the DRC consultation document and it includes Government Departments, many Local Authorities, Universities, Colleges, Regional Development Agencies, and many Health and Regulatory Bodies. In the process of producing this Disability Equality Scheme these key bodies must: How will it be enforced? In relation to the Specific Duty and those bodies who will have to produce a Disability Equality Scheme, the DRC will have the power to issue compliance notices where it is satisfied that a public authority has failed to comply with its specific duties under the regulations, and can enforce the notices in the county or sheriff court. |