Title : Annual Disability Lecture – held at Cambridge University
Date: Thursday 20th March 2014


VICE-CHANCELLOR: Well, ladies and gentlemen, good evening and welcome. This is the 11th Annual Lecture in what has become almost a fixture now in the University's calendar and I am very proud that this lecture should be so. And this year is particularly special, because it has been adapted into the programme of the Cambridge Science Festival, probably one of the most successful science festivals in the United Kingdom, and makes this an absolutely main line presentation in the importance that we place on disability.
This year it is a particular personal pleasure to welcome Dr. Rachel Perkins as our lecturer; however, in thanking Dr. Perkins for coming to Cambridge to give this lecture I also want to thank Ray Jobling, on two counts; firstly for agreeing to chair questions afterwards, since unfortunately I am not able to stay right to the very end of the talk. But more importantly, for establishing the series of lectures in the first place.
As many of will you know, Ray chaired the University's Advisory Committee on Disability from the mid 1990s I am told and helped put together the proposal which gained firstly Higher Education Funding Council Funding to set up the Disability Resource Centre. So Ray, many thanks for doing that and I hope you like the fruits of all your labours.
But today we also remember another pioneer. Margaret Spufford, who is Fellow at Newnham College and Professor of history, she was the founder of the Bridget's Hostel and the Bridget’s Trust, both local disability charities. The Bridget’s Trust was a precursor to the Disability Resource Centre, in its funding of disabled student support at Cambridge and was also subsequently a major donor to the Disability Resource Centre itself, in the form of bursaries to disabled students. Unfortunately, Margaret Spufford died this week and it's fitting that we can remember her on this occasion.
Now our speaker Dr. Perkins was chosen because of her work in supporting people with mental health difficulties in employment. Through a model of creating more inclusive environments, as a clinical psychologist she advises on the development of mental health services, nationally and internationally. She has worked in NHS mental health services for 30 years; and she was Mind Champion of the Year in 2010. And has been awarded the OBE for services to mental health.
These are important matters for society at large, and as part of society for this university too. Employment rates for people with mental health conditions is 13.5% in contrast to non disabled people at 72.5%. And mental health is currently the hot topic at this university, because increasing numbers of students are being much more open about the issues and seek support and that I am very, very proud of.
This is a reflected in numbers, because we have seen a steep increase in the number of current students with mental health difficulties who have disclosed this to the DRC voluntarily, 13 students I understand in 2003/4, to 233 in 2013/14 and those of you who like to do the maths that's a 1700 % increase! But what's more important is that these students find the confidence that the Disability Resource Centre can really help them with the issues, because we know what the national statistics are and this is something that is now being reflected in real numbers that we would naturally expect.
The University Counselling Service has noted a 23% increase in demand over the last four years, and of course I have noticed that by an increase in demand for funding for the Disability Resource Centre. The Counselling Service is one type of support available to students, in addition to that provided by the colleges, and by students themselves and the DRC which supports these activities through mentoring and study skills.
So while support for individuals in difficulty will always be necessary, it is perhaps time to start to look at what we can do as a university community to create environments which are not only mentally inclusive, but actively supportive of all our members. I would love to say we are doing so already, but boy is there a lot more we can do to improve. So it is with that in mind, it is my very great and personal pleasure to invite Dr. Perkins to speak, and her title is: Creating mentally inclusive communities: Embracing distress as part of everyday life. Rachel, over to you.
{Applause}.


RACHEL PERKINS: Thank you. Thank you.
I am very honoured if a little daunted to be invited to speak here tonight. You do understand that the PhD is actually a very elderly PhD in boredom! So you have all been warned, I am an expert in boredom!
I just want to really start by introducing myself again if I may; because I guess there are always two bits of me. There is Rachel with all the bits after her name, yes I was a clinical psychologist, but I guess over the years of working in the NHS I very quickly realised that actually there was only so much you could do with all my fancy therapy, and I have been much better off helping people to get jobs. And I can give you the research background to that if you want, but so I spent most of my career actually helping set up programmes to help people with mental health conditions to get jobs, including employing in the mental health services. When I left the trust I used to work for a quarter of the work force had mental health conditions, and that included the Chief Executive. And the director of nursing. And with we have even employed a consultant psychiatrist who had himself been compulsorily detained in a hospital, that is my coup if you like, I have done an awful lot of work around employment, all sorts, I am now trying to influence government. That is a little more challenging. To have to be grateful for small mercies; written lots of stuff, got all these ridiculous OBE and things, but there is another Rachel, there is Rachel Perkins mental patient, there as one who has a diagnosis of manic depression, we have to call it bipolar disorder, now. I actually prefer manic depression, myself, sounds much more exciting! Doesn't it? I think so! Lots of hospital admissions, ECT, I still take the pills.
Now, when you think of that Rachel Perkins, it is a slightly different one. What are the images that conjures up? Well you have a choice haven't you? You can be a poor unfortunate who can't do anything for themselves and needs to be looked after. Or you can be a mad axe murderer, who needs to be locked up for everyone else’s good or of course you can nowadays be a social security scrounger, who ought to pull themselves together and whichever you look at it you are a burden. People talk about the burden of mental illness. There’s always all the tax I have paid over the years, never mind I am a burden. Which would you prefer? I always err slightly on the side of mad axe murderer because I couldn't bear the poor incompetent bit but I will leave you to make those choices yourselves.
I suppose our usual way of approaching the whole issue of mental health problems is it is a clinical problem. You have got to the get clever clinicians like me on the case; get rid of the burden by getting rid of the problem. And it’s, I have written very much about our traditional services being based on care, cure and containment. On the one hand we do a lot of diagnosing; sorry, psychologists don't diagnose, we formulate not a lot of difference in my book but never mind we formulate! Treating people, of course psychologists don't do it with those nasty drugs. We do it with those nice talking therapies. And of course getting people better, and unless and until they get better, we have got all sorts of nice sheltered places you can go, there is hospitals and hostels, and yes I am afraid still a lot of day centres knocking around. Baroness Campbell, who I believe gave this lecture, said: Rachel, day centres are a thing of the past. I said: Come and look in mental health and of course we have still got a fair few sheltered workshops and stuff, out of sight out of mind and definitely out of our communities. And of course there is a little underpinning to this if they won't do it voluntarily, we will make them with the Mental Health Act.
I will come back to that.
So, I guess for my money, mental health problems aren't just a clinical challenge. They are an enormous social and personal challenge. One of the biggest problems that most people talk about if you talk to people with mental health problems is all that it means to have a mental health problem in our society. What it actually means of things that go along with that. Now there are obviously the big things, and an awful lot of people lose their jobs, lose their friends, lose their homes, lose all things they value in life. When I was first diagnosed I was terrified I was going to lose everything, especially my sports car. I love my sports car. One psychiatrist did once ask me how many sports cars I had bought, it was only one, honest! But actually there are also the little things those people start treating you differently. They stop believing what you say. Walking on egg shells, you know, just in case you burst into floods of tears or get furious and it's quite priceless how people do stop believing you. Last time I was in hospital, at that time I was managing a budget of about 45 million pounds and I was in a psychiatric hospital. And I had been to the gym - hospitals have got much better these days, there’s a gym. And I came back from the gym to the ward. And with the person who run the gym session and a nurse said to me, ‘Where are have you been Rachel?’ and I said ‘I have been to the gym’. And this nurse turned to the person I was with and said, ‘Did she?’ I don't think they meant anything bad, but you can't trust them, you see. And there are some, and I think actually the reason I am saying this is that yes, there are the big inequities but it's often the little things that erode the soul so much, the little snubs, the little doubtings, the is Rachel really all right? I have a bit of advice, I always give to people with mental health problems at work or at college never get upset or angry at work. Because someone will ask, is Rachel really all right? If you they don't ask you, not to your face, they ask all the people around you and I worked in the mental health service, you have got to understand.
So I guess what I am trying to say is that actually getting diagnosed as a mental patient is actually a really devastating and life changing event. It is a kind of kind of a bereavement, a loss of a sense of who you are, loss of meaning, loss of purpose, what is my life about? Erm, loss of status, loss of power. And most importantly, loss of hopes and dreams. And I think that for me has been the most devastating thing I have seen in people, I meet so many people in my work and outside who have become what I call, "I used to be" people. "I used to be a student", "I used to be a bank manager", "I used to be a builder" and now I am just a mental patient. And I thought that was the thing of the past, that recently I did a independent review for government, actually it was the last government, James Purnell asked me to do a review and then resigned two weeks later. Fascinating! I was in Ireland at the time. I didn't know whether it was carrying on but I actually organised a group of people I wanted to speak to have young people who had mental health problems who were trying to get work and there was a young woman from the other university, that Oxford place, who sat there and said, ‘yeah, yeah, erm actually my psychiatrist told me that I really shouldn't try and get a job. You see, he said it will be too stressful for me.’ I can't tell you how angry I was. One of the people with me broke the pencil he was so angry. There was something about telling a lass who just graduated, no don't you try and get a job, it's going to be too much for you. And there is something about what that does to those hopes, those dreams. And I guess everyone who is diagnosed with any sort of mental health condition faces that challenge, of hanging on to or rebuilding a meaningful satisfying valued life. And I guess that's not just about treatment, is it? It is about making sense of what has happened, finding meaning in it; if you want to ask me, recovery is actually the search for meaning. Meaning in your life, the meaning in why.
I guess it's also a whole set of things about finding a new sense of purpose, with this new identity. Discovering your own resources, resourcefulness, people tell you you haven't got many of them. When you go to mental health services, everyone tells you what to do. The trouble is it is not just in mental health services, is it? Your mum tells you what to do, your best friend, if I was you, I would.... there is an awful lot of experts when you develop mental health problems. And I suppose it is that challenge of growing within and beyond what's happened to you. Everyone is way of doing that is going to be different, but they do appear to be 3 things, that are absolutely critical. First one is hope. Actually believing that a decent life is possible. You cannot grow beyond what has happened to you unless you believe that and the trouble is that so many places people turn, there is "Oh, that might be too stressful for you!" My first psychiatrist told me that. He said, "Rachel, I am not sure you can come back to being a clinical psychologist; maybe an administrative job, you are good with computers!" I am afraid I was non compliant and she was wrong! {Laughter}. But I wonder, there are millions of people out there, who have actually believed the experts. I suppose the next thing is actually getting back in the driving seat of your life. Actually making your own decisions. People talk about choice, I talk about control. And I don't talk about empowerment, I talk about power; I am afraid. I find empowerment one of those sorts of psychological versions of the real thing.
I guess it is about getting back in charge of your life. Getting back in charge of your problems and getting back in charge of the help you receive. You decide what helps but most importantly I guess it's the opportunity to do the things you value, it is actually about citizenship. The opportunity to participate as an equal citizen and that's what I am going to be focusing on today.
I guess what I am going to say here is that a clinical approach hasn't really helped us very much with that. Erm, over the last few decades we have seen the demise of the remote asylums, you had quite a few round here didn't you? Am I right Fulbourn? Is it still open? Has it still got all those old long stay villas? Or have they made it posher now, they have made it posher now, didn't you have there is another one I won't try, but we have seen the demise of those, we have seen the development of all sorts of new and better treatments and therapies. We have actually seen - it might not feel it like it all the time - greatly increased access to therapies with early intervention teams; IAPT, we are very good at hopeless acronyms, that psychology in primary care, you can see one of me without going to Fulbourn. We have also got better ongoing support in the community, fewer people lost to follow-up and of course we have really focused on getting in there early and making our diagnosis and our formulations.
The trouble is as we have increased the people who are followed up; we have also seen an increase in exclusion actually. The employment rates for all mental health conditions is about 28%, for people with more serious conditions, around, 8%, if you average those you get to the 13.5% your Vice Chancellor came up with. Actually, that is the lowest employment rate of all disabled people; which is quite frightening, this little graph you don't have to read it, the one on the end, the lowest block is actually people with mental health problems. Proportion of people on incapacity benefit is just going up and up and no matter how much they change the work capabilities assessments, to get rid of the scroungers, there is still the number of people with a mental health condition who are receiving incapacity benefits ESA etc is going up, actually it was quite handy that. I was talking about employment in mental health 20 years ago; they wouldn't speak to you in government then, because all they were worried about was musculo-skeletal disorders when we overtook musculo-skeletal, then people would start listening to you. You suddenly started being a persona grata. But I think we have also got to say people are much more likely to be socially isolated, living alone, face barriers in education and I know you have done an awful lot here but right from the start how many kids with behavioural problems are excluded from school? Is that going to get better or worse with our new legislation? I will take a rain check on that one. There is also the issue that actually people with mental health conditions have the highest employment deficit of people of all disabled people. What that means, whether or not they are employed given the level of education they have got. So if you do get your education if you get your degrees and your PhDs you are less likely to be employed and are less likely to be employed in senior positions.
And of course this means, Oh and by the way you also know we can't be baby sitters. Oh yeah. They do an attitudes towards mental illness survey and three quarters of the great British public would not allow someone who had been a mental patient to baby sit their child. They don't mind them living next door so much but not babysitting children. Of course, I have got the other 25% here haven't I? You're not part of that. And they never consult you.
So what with we are actual finding is that 88% of people with mental health conditions are actually reporting experiencing negative discrimination, and again building on what your Vice Chancellor said, 72% feel they have to keep quiet about it. The number of people disclosing a mental health condition has gone up at Cambridge, but it's still nothing like the number of people who have mental health conditions, I am not going to be awful and ask how many people here have, that would be rude. So I suppose, that's what we are actually facing. The trouble is focusing on experts to sort this out can actually have a perverse effect. What it means is that when people like me get mental health problems they think, got to consult the experts, they can sort it all out. My nearest and dearest, my colleagues, my friends think, Oh, not safe in my untrained hands, better leave it to the experts. So as we get more and better services, so our communities get less and less good at accommodating mental distress, mental disturbance as part of everyday life. I guess there is also another little problem one of the big messages for most anti stigma campaigns in mental health has been mental illness is an illness like any other. World Health Organisation use it, the World Psychiatric Association, mental health is an illness like any other, now the theory of that is that if people aren't responsible for their problems, then everyone will treat you nicely. The trouble is the reality is a bit different; because if people aren't responsible for their problems they are not in control, and if you look at the research literature around this, if you hold a biomedical view of mental health problems you're more likely to be worried about dangerousness, unpredictability, fear people and to prefer social distance, which means you don't want to be friends with them, let alone actually get married to one. Or your daughter get married to one.
I suppose really what you have done and by the way, there is no good for relatives either. Because people prefer a lot of social distance from them, siblings and parents of people with mental health problems, because they might catch it! So in a sense we have got this great success, that we persuaded the great British public, the world public, that mental health illness is an illness like any other, that has been successful, the trouble is along with that we haven't decreased the prejudice discrimination that people experience.
I think we do need another way of approaching the issue and I suppose what for me one of the most important I am going to say revelations but I probably should have known it earlier, is that actually the clinical paradigm isn't useful for helping people to rebuild their lives. Now I am not saying treatment isn't important. What I am saying is it is probably less important than professionals like me would like it to be, it's my pension, you know. But I think we have got to re frame it; the question we have got to ask about treatment whether it be pharmacological or psychological is not does it get rid of problems but does it help people to get lives? So for those of you in a does Clozapine get you a job? For those of you who don't know, that's a novel anti psychotic drug. Does CBT, cognitive behaviour therapy, all the rage, does that get you a partner? Does occupational therapy get you a home? What I am saying is that we have got to actually ask different things of treatment. It will have a role; I suspect it will be a much smaller role than a lot of people think, because there is no treatment for prejudice, discrimination. And let's lets face it, there is no statute of limitations on a mental health diagnosis are there? It is you have got a criminal record; it goes off it after a while. Unfortunately, you still have you ever had mental health problems? It used to be going to America didn't it? You know, that bit you got on the aeroplane; have you ever been a terrorist? Have you ever abducted an American child? Have you ever had a mental illness? And you had to lie because it became far too complex not to, you have to lie on insurance forms all the time. I stupidly decided a few years ago I wanted to walk the Tour de Mont Blanc. It's going round the Mont Blanc massif; you have to have the sort of travelling insurance that gets a helicopter out. And of course you looked at this form and it said, have you ever had mental health problems? Have you ever had depression, bipolar? Because they thought you were going to jump off instead! So of course you had to lie! Try getting life insurance as well. I guess none of those are actually changed by treatment.
I think the next thing is I know we all like to be terribly optimistic these days, and mental illness is like the common cold we can just treat it and it's all goes away. Rubbish. Some people are left with problem that's are ongoing, but most people whether you have got a common mental health problem or a more severe one have problems that come back from time to time. You will be fine for long period of time you will have bad bit and if you have got recurring or ever present challenges, then actually we need another model. We need actually a way of saying, how can we actually enable you to be an equal citizen with those problems? And in that context, I discovered about 15 years ago we have got to learn from the broader disability movement. God you’ve have known it for ages, this it's old hat stuff, it wasn't in mental health and it still isn't. You know, actually I think we have to actually ask ourselves the question are we changing people to fit in, or are we changing the world so it can accommodate all of us? Almost all that mental health services do is trying to change people so they fit in. We medicate their symptoms, we do nice psychological therapies and we get rid of their, you know, erm and we of course have got to teach them how to do things don't we? Skills deficit, you we develop skills deficits when we get mental health problems, we have to do a bit of skills training the reality is the whole message is around how we change people to fit in.
What the broader disability world discovered long ago was the real challenge is to change the world so we can accommodate all of us and I suppose that's where I have started to come from in the whole mental health bit. Bit embarrassing because I was a psychologist you see, my stock in trade was actually changing people to fit in. I then became a director, so I was alright, I wasn't unemployed, but again, what actually Mike Oliver and people put forward of the social model it is actually attitudes actions assumptions, the social barriers that are we erect that actually disable people and actually if you look in the mental health literature, not many people have actually seen this. Way back in the early 90s in the States people in the American user movement were saying, hang on, this is us. Actually, for many of us, mental health problems are a given. The real challenges are the problems that stop us the barriers in the environment that stop us living working and learning in the environments of our choice. We have actually got to do something about it, that's Pat Deegan. I could have quoted Judy Chamberlain to you there. A lot of the American civil rights movement included people with mental health problems, that was less obvious in this country. Mental health is sort of seen as being a bit out there, do any of you follow the Office for Disability Issues? And the road map? Come across it? The Office for Disability Issues and the government issue these lovely things about how we are going to create equality. The first one they did mentioned mental health problems once. And it was in the context of people with mental health problems in prison.
I think you have missed out most of us.
So I suppose what we, I think if we take more of a social model as a disability movement have, we stop asking ourselves as every mental health service asks what is wrong with this person, how we can put it right, we start asking what are the barriers and how can we get around them? And so I think our big challenge is thinking about support. What is the mental health equivalent of a wheelchair? What's the mental health equivalent of a hearing loop? What sort of adjustments might people need? What is the mental health equivalent of a lift? What is the mental health equivalent of Braille? Now you have got lots of manuals for them in the physical arena. Any you have got an occupational therapy background here? They have got huge manuals of adjustments. There is no such thing for people with mental health conditions. We hadn't thought about them in that light. And of course we have got to break down the prejudice and the discrimination that actually excluded and I think this makes mental health challenges everyone's business, not just the special preserve of mental health services. Because you see if you think about the challenges of living with a mental health condition, first of all, they don't affect your ability to negotiate the able bodied social world. They actually affect your ability to negotiate the able minded social world that we live in, it is actually social interactions, social world that actually people are concerned about. And of course that means all of us. I know that certain people get very upset when people start bursting into tears - Do any of you travel on the London Underground? Yes, someone is having a panic attack on the London Underground, you must have seen it, you avoid them. You ignore them; you pretend they are not there. It is polite not to notice. If someone falls over, you help them get up. But no, we are not very good at those social and emotional things and I think the other challenge we face is that they fluctuate. So what we have got to be doing is thinking about fluctuating supports and adjustments and actually all of our programmes that we have aren't very good at that. Access to Work struggles with fluctuating adjustments. They’l get there. But they are struggling at the moment.
I suppose if we were able to accommodate the sort of emotional challenges that someone with a mental health condition experiences, actually that would make the world a better place for all of us wouldn't it? Because if you think about it, just how many people have difficulties in negotiating the social world? You know, what you are supposed to do in new situations. You have all done it. You start a new job and you're not quite sure what the hell you are supposed to be doing and who everyone is and what the rules are, most important what the unwritten rules are. Because there will be the official ones won't there, and actually most of us have a fluctuating ability to cope don't we? We all have bad days. And we all have bad times; when people we love die, when the kids are having problems at school. Or as one woman had slight challenge who I was working with, her husband left and took the car. She didn't mind about her husband! (Laughter) but she needed the car to get to work! That was the serious bit.
I guess the trouble is that, as I said, the sorts of adjustments the mental health equivalent of a wheelchair, the ramp, the lift, aren't very well explored, and actually people feel terribly de skilled when you talk about mental health problems because they are terribly worried about saying the wrong thing. Should I speak to him? What should I say, will I just make matters worse? There is a whole national campaign you might have come across the time to change campaign that is saying, it is entitled: "It is good to talk". Saying please don't, but I suppose the reality is, it is not rocket science. One of the troubles with the burgeoning professions like mine is that we have made having a conversation into a psychological act. We have made telling stories narrative therapy. We are very good gardening is gardening therapy of course and you can't paint a picture if you are mad without it being art therapy! You're not allowed just to be an artist! {Laughter}.
Have you ever heard that? There was a terrible rights case, about who owned the art of someone in art therapy? You know what the conclusion was that the person who had drawn it didn't own it; it was the Secretary of State for Health because it was done as part of therapy and therefore constituted part of the clinical notes; isn't that shocking? That is real, that is not made up. But I guess we are really good at translating things into very clever fancy language. When I think about my years as a psychologist, I could dress every conversation I had up in the language of therapy. Actually most often it was having a chat, helping someone to fix the washing machine; helping someone to decide whether they were going to leave their fellow or not. It was actually not technical treatment. And I suppose little things make a huge difference. Noticing when someone is not so good. Talking about it. Not: are you going mad? But: you don't seem quite yourself. You know, you don't seem quite yourself today. Discussing what practical steps you can take to actually alleviate some of the distress, I am not talking about fancy therapy, but the practical help and I think there is a bit of don't assumes, aren't there, don't assume that the person has mental health problems. There is one school of awareness raising for employment that says we must go and tell employers all the symptoms of mental health problems so they can spot them. Mental health first aid training, ala Australia has what you have got to be on the look out for. That is not the game. Actually if we are going to create mentally inclusive communities we have got to be able to approach and help anyone who is having a bad day, whether or not it has a nice label of mental illness. I suppose don't assume also that the person isn't going to be able to cope. Let me assure you that having a good cry and having a good tantrum are ways of coping, they are not ways of giving up so let's actually aren't they? You obviously have good tantrums! {Laughter}. . It's great, they and you can go on. I think the final thing is don't assume you have got to be an expert or indeed that you are an expert. There is a lot of people who are experts as I said, it is a question of working things out together.
Sometimes people do need some special support and adjustments. And when I talk to employers they normally say Oh it is just people who want to get let off the bad bits of the job. Or they only started having problems when we started disciplinary proceedings. It is the idea it is a bit like the social security scroungers but in the employment thing isn't it? They are just trying to get away with it. Actually what we are talking about is the sorts of adjustment that's enable everyone to cope. You know, someone to show you round in a new job. Any of you actually started, I don't, when you start at Cambridge, as a lecturer or whatever you start as, does someone show you round, tell you what to do? Or do you get sort of dropped in delicately in the deep end? I don't know. In the NHS you just get dumped in at the deep end, in fact someone pushes you and you have got a job description that bears no relation to what you should be doing! {Laughter}. And they have got even longer with the Agenda for Change; if anyone works in the NHS they have got five pages of complete gibberish now.
Someone to actually help show you round the ropes, you know, a mentor, someone to teach you all those unwritten rules. Someone to go to if you are not quite sure what you should be doing. Actually getting regular feedback, supervision, even little things. I demanded an adjustment off my boss who was the Chief Executive. The adjustment I asked for was him to say, thank you when I had done a piece of work for him! And I said it was very simple, didn't need him to use the whole word, all he had to do was type in, TA return. And then I would be quite happy! There was just something about actually I think we have got into the habit of not noticing when people have done some things for each other, and actually noticing that can be really important if you your confidence is at a really low ebb.
Helping with prioritising demands so certainly that is not uncommon in any job is it, all things that would help everyone and a bit of flexibility and start and finish times, again I live in London on the Northern Line. And the Northern Line in the rush hour is not a good place for a sane person! Let alone a mad person {Laughter}. ... but before or after the rush hour? I suppose though if you have got fluctuating conditions, it is not just a question of going off and disappearing off sick, is it? Actually if you have got a fluctuating condition, if you can put the adjustments and support in when a person is having a bad time, they can often continue. Boring things like, why don't we reduce workload for a bit? Why don't we actually relieve people of the responsibilities they are finding challenging? A short holiday, ? a bit of extra support? Working from home? Lots of possible solutions. We normally think about those in terms of going back to work. How about thinking them in terms of not having to leave work or studying or your other social responsibilities instead? And, as I say, if a person has got a fluctuating condition, you can make those plans in advance. I had it down to a fine art by the time I retired from the health service. Make sure you have told your secretary your password. Make sure you have cleared your desk up so that actually everyone knows where everything is. And tell them in a week or so's time you want them sending you back those reports to write because I knew I could start working at home long before I could actually get back to work. They all were queuing up waiting for me to write all the report that's nobody else wanted to write. I sometimes think they drove me mad deliberately!
If a person does have to take time off, actually keeping in touch, there was a lovely mental health public health advert that said, you know, when I broke my leg everyone sent me a card. When I was off with depression, nobody sent me anything. They didn't call, they didn't write. I said that and I have said it at rather too many conferences because the last time I was admitted, I got four bunches of flowers {Laughter}, in, you know, a psychiatric ward they can never find vases! Because you're not allowed to have glass and you have got to find buckets and, Oh.... terrible business! But I suppose it's also about remembering just how difficult it is to walk back into work if you have been off in a psychiatric hospital. I used to think the most difficult I had ever done was my PhD Viva, actually I know now that it was walking back that first time into work after I had been off work for the best part of six months and in a hospital and it is extraordinary and everybody around me there could have helped, actually what they did, this was a mental health service. Everyone pretended I hadn't been away. Didn’t say - Nice to see you! Or, how are you? And I, it was quite extraordinary how no one could actually quite bring themselves to talk about it. Mental health services are very good at having patients, but when they become your colleagues.... that's a different issue.
It is also about actually making plans to come back. They used to be a bit of Department of Health guidance that said people had to start off half time and then gradually build up their hours. That is lacking in imagination. There is lots of ways of gradually getting back into work. It might be going in all the time just doing a bit less, it might be taking stuff home. But how are we actually going to help that person get over that abject fear of walking back in and how are we going to help them decide what to tell their colleagues? That is one of the most difficult things that people have and you, you know, that's not just about mental health problems. One of the people who worked for me, very tragically, her son killed himself and she obviously had some time off work; as a result of that. When she came back she I was talking was talking to her and she said, I just can't bear everybody asking me how I am, I can't have those 27 million conversations about how I am. I said, how do you want me to play that then? She said, could you tell them? We composed an e.mail that was saying, I am coming back to work. I am feeling better still very shaky, tragic thing that happened, please I don't want to talk about it all the time. So please don't. And actually that worked. But it was just her adjustment for how we dealt with that awful bit of coming back to work.
I guess the other thing we should never under estimate is the power of peer support. Other people who faced similar challenges. Actually talking to somebody else who has gone back to work with a mental health problem, I was the luckiest person in the world, my second psychiatrist when I was trying to go back to work she said, “you will make it you know”, I said “no you don't understand,” She said, “no I don't understand what you are going through but I was this a psychiatric hospital three years ago and I never thought I would go back to work.” I was lucky having the two in one person, actually I think we must never forget how important it is to have somebody who actually understands what you shall going through to be there and supporting you when you are doing difficult things and they can often give you tips about what to do and what not to do.
I was doing a talk at Credit Suisse bank, God it was dead posh you get very good biscuits! Canary Wharf. And I was talking about employment and people going back to work and they do things very quickly in the banking industry. I was talking about the power of peer support, someone said, you know, the most useful thing to me when I came back, was somebody else who had depression in my department, he helped me, we are going to set up a programme of peer support in the Credit Suisse bank. And I believe they just sort of did it. They went off and had a meeting. I guess, just those little things can make an enormous difference.
But I suppose we have also got to think about how we actually break down some of the prejudice and discrimination that are around. And I think I might upset people here because when I look at the anti discrimination campaigns, the anti stigma campaigns, as they call them, I think they are actually about: Please be nice to the poor unfortunates. I am ever so sorry to anyone who's deeply involved in Time to Change; you have done lots of wonderful things. But I think the reality is we cannot rely on: Please be nice to the poor unfortunates; I think as the broader of disability rights world knows, the velvet glove of persuasion has got to be backed up by the iron fist of legislation, hasn't it? You ain't allowed to do it. And, you know, actually, the broader of disability world you it doesn't feel like it but you haven't half come a long way; if you think about the sort of legislation now that was unthinkable 30 years ago. Trouble is people with mental health conditions don't realise by and large that they are part of that. And they often get left off the end of things. I am delighted that they don't at the DRC here in Cambridge. But I suppose we have actually got to understand the relationship between discrimination and power haven't we? Not empowerment, power. If you look at the work of Bruce Link and Jo Phelan, they talk about the process of excluding people. They said, actually there are four interlocking components; first of all we have got to identify human differences. Most of them don't matter, but we pick out a few salient ones, going mad is a salient one. I suspect being a wheelchair user is salient one too. We then link all sorts of strange beliefs to it. People, you know, does he take, sugar being the classic one. But I guess in mental health it is more dangerous, unreliable, unpredictable, not quite sure what they will do next. And then of course we break people into distinct categories, there is them and us isn't there? You have got to work out which group you're in. And then, I never know whether I am talking about them and us, because I was the lunatic running the asylum you see. So, the horrible no man's land between them and us I guess they experience that loss of status discrimination exclusion, but the whole of that process is contingent on power. The power to identify which differences matter. The power to actually attach characteristics to them, the power to actually deprive those who labelled of their rights, of their citizenship. If you think about mental health arena, actually, until last year I wasn't allowed to serve on a jury. You see, there was a rule that said anyone who is receiving any sort of treatment for a mental health problem wasn't allowed to do jury service, if any of have you followed my writings I have been writing about this for some time. I had a bit of a shock last year, because they said: Rachel, you are going to be able to do jury service. I said: I don't want to do jury service; it was the principal of the thing. But actually and of course if you have been compulsorily detained under the Mental Health Act for six months you can't be an MP, or a company director or a school governor. Fortunately, last year, there was an Act passed called the Mental Health Discrimination Act, but that actually got rid of those things and I think that was really good. But we have also got this nasty little thing and I have to get on my high horse about this called the Mental Health Act. The Mental Health Act still allows people with mental health conditions to be detained and treated in hospital against their will for a mental disorder, for the protection of others or for the protection of themselves. And this is inherently discriminatory. It is a set of laws that apply only to one class of people, those determined to be mentally ill. We never think of doing that in the physical health arena. We can do it in the mental health arena, and it is not about capacity in this context. Actually most people detained under the Mental Health Act have capacity. It was amended it was extended in 2008, so we could compel people in the community; we can force people to be treated outside hospital. There was a theory around this. It means we would have to detain fewer people in hospital and they would be treated outside and it wouldn't involve many people, only about 4 600. The reality is the number of people detained in hospital has continued to rise. 48 thousand times in a year people are actually detained in hospital against their will and treated and we have got the odd 4000 being compelled in the community as well. Actually the Annual Report of the High Commissioner on Human Rights has deemed this to contravene article 3, 12 and 14 of the UNCRPD, so any of you who are involved in the country reports please could you remember this when you do that report?
But I suppose just to finish up with, I think the most challenging thing is that maybe if we are really going to break down some of the discrimination, the exclusion that exists, the denial of citizenship, maybe we actually have to start valuing the experience itself. And actually madness has zero status as a human experience, doesn't it? I read about soldiers who have limbs missing climbing Everest. I read about people with cancer running marathons. When do I read the same about someone with schizophrenia? When do I read the same I think we have got a very low status thing I guess mental health problems may be a catastrophic and life changing experience but maybe, just maybe, we have to entertain the possibility that some of those changes are for the better, not for the worse. And I guess yes, there are some dodgy research linking creativity and madness. But actually the world would be a very much poorer place without some people who have had significant mental health problems. I have tried to be eclectic in this list. Whether you are into Virginia Woolf or Ray Davis, Sting or Winston Churchill, Captain Fitzroy he is the one who has a sea area named after him now he did. He became Fitzroy, the captain of the Beagle, Darwin’s ship Stephen Fry, Dolly Parton if you fancy or into business Ted Turner. I guess the world would be a poorer place without those people and if you read what some people have actually said, I am going to finish with the words of people who are a hell of a lot better than me. The Norwegian Prime Minister, he describes his experience of very severe clinical depression: "Life has expanded because of those weeks. Life is richer because of those weeks. Through that period I have become stronger. I have learned more about myself, appreciate more... I became a better leader". Or one of my favourite people, Kay Jamison said, she's a professor of psychiatry at Johns Hopkins, she said: "I have often asked myself whether, given the choice, I would choose to have manic depressive illness.... Strangely enough I think I would choose to have it. It is complicated. Depression is awful beyond words or sounds or images. So why would I want to have anything to do with this illness? Because I honestly believe that as a result of it, I have felt more things more deeply; had more experiences more intensely; loved more and been loved; laughed more for having cried more Appreciated more the springs for all the winters; worn death as close as dungarees; appreciated it and life more; seen the finest and the most terrible in people; and slowly learned the values of caring, loyalty and seeing things through".
Or more briefly in the words of Leonard Cohen: "Forget your perfect offering. There is a crack in everything. That's what lets the light in."
So for all of you who haven't experienced the extremes of human emotion, I feel sorry for you! {Laughter}. I am going to shut up there.
{Applause}.

RAY JOBLING: Catch your breath.
RACHEL PERKINS: Thank you yes.

{Applause}.

RAY JOBLING: I have been asked to mention we are recording so you will all be there for the long term record if you ask a question. I will encourage you to ask questions. We have had a brilliant talk and I think the questions are an important part. So it is over to you.
RACHEL PERKINS: Not just questions, you can tell me I am just talking rubbish! {Laughter}.

NEW SPEAKER: Don't be shy.
FROM THE FLOOR: I always seem to be the one who draws the first question. Dr. Perkins, my name is Colin Marsh. I’m a retired University Careers Adviser and I am very interested in your comments about the deficit on employment. Not at this university I have to say, which is their loss not mine, erm, I am also although I have had certainly a couple of nervous breakdowns, my issue is I have a stammer and I am a director of the British Stammer Association and quite a few of the things you mentioned happened to me as a kid; people finished my sentences for me, they will talk across me. I even have had a case where one mother said to the children: Don't play with that boy, he speaks funny! You talked about mental illness being catching; in the 50s people thought stammering was catching as well. Can I talk to you
RACHEL PERKINS: I think you're right. And I don't think these are unique.
FROM THE FLOOR: Yes, and we are doing some work at the moment at the British Stammer Association on employment and we are also setting up a network of employers to you mention Credit Suisse, that's one we have had contact with in terms of identifying people in the company who may have a stammer, who may feel their careers are being held back and what they can do about it. I am beginning to lose the train of my thought, but what I wanted to say was I think you are right that you highlight the fact that people with any kind of mental illness, and I am always conscious of the PC crowd if I use the wrong word, I love your {Inaudible} the asylum but, you know, could you get away with that? In certain audiences I bet you couldn't. I do think we have an issue with the BSA, which is very similar to the issues you face, that an awful lot of people out there, who are very highly educated, are told either they will never get a job or they won't get a job that reflects that capacity and I know, but I can't prove it, there is statistically quite a lot of people out there with communication problems, not a stammer but dyslexia who are working well below their intellectual capability. Not just because that's their choice, but often because they are told that's where you are going. When I was being interviewed for a training place as a careers adviser 40 years ago, and this is a caring profession remember, the head of the panel said: Don’t you think you should get another career with your speech defect, young man, and we are a caring profession; and I have to say I have lost at least one job in a university, not very far from here because I had a stammer. Not because I had, you know, I had a bad accident and off work for six months or because I had a nervous breakdown; no, if we knew you had a stammer we wouldn't have employed you and I am sure that you could find many people with a similar mental health
RACHEL PERKINS: I think that's really important because again a stammer is influencing those social interactions and we are not very good at thinking about how we make adjustments in the social world and it is not just directly, is it? You don't look fluent at an interview because you are terribly nervous, but the whole bit, the whole bit conspires doesn't it? No. Absolutely. Now my ‘nervous’ was in inverted commas, but I guess it is that whole bit that actually it conspires in many ways, I think you're absolutely right, yes.
FROM THE FLOOR: Yes, it is very interesting to hear an entire hour's lecture on mental illness without a single mention of the word "service user" so I congratulate you on that! {Laughter}. I would share with the audience that I, about ten years ago I was given a diagnosis of schizophrenia and I have to say that ten years on from that diagnosis I am ten times the person that I was prior to that diagnosis. Erm, but I see and in fact I am a governor of the mental health CPFT, Cambridge Peterborough Foundation Trust, now and feel that I can give back in some way in that role. What I would say though is what I perceive is a twofold problem, part of it is about how society sees people with mental illness but it's also very much about how people with mental illness view themselves. And so we have a Service User Network, peer support, if you like, which is largely about explaining to the world how needy we are, how we can't work, how we need our benefit; how there aren't opportunities for us and it just seems to me completely counter productive and I apologise to the many people out there who I empathise with enormously, but as somebody who has worked in the last, over the last 7 years I know how valuable that is to me, and it scares me that that actually I think tackling the service user concept is a far bigger challenge actually than tackling the challenge of society turning round and saying to you, erm, you know, you can't belong because I think it's actually service users who believe that about themselves.
RACHEL PERKINS: I think that's one of those awful sorts of dilemmas; I am afraid I don't like the term "service user" terribly because I think an oppressed group defining themselves in terms of the service they use is odd. So I prefer to use the term "mad" {Laughter}. I used it in a Mind conference about ten years ago and the world wasn't ready for it yet, but my friend Mary O’Hagan had just written a book called "Madness made me". So maybe we are there, but I think there is that awful thing of people putting themselves down, isn't it, and there has been a lot of work done on self stigmatisation. I actually think I worry, it's very easy to say how can we blame the poor unfortunate for excluding themselves when actually the world has been a pretty nasty place, but I agree. I think the differences are we are there fighting for positive rights or negative ones and one of the biggest tragedies about the work I have done in employment, is that before we started all this silly nonsense around, you know, conditionality and if you didn't look for a job then you got your benefits stopped and all that. People used to be prepared to have a go. It was very easy to talk about the right to work. Now I find it really hard to talk about the right to work, because the fear of abject poverty people are actually spending all their time defending the rights to benefits, the right not to work. And I think we have landed ourselves up in a real muddle there. I get beaten up by that quite a lot, yeah.
FROM THE FLOOR: Mine is a short question. I just wondered if you think that some of the strategies that human resource departments use to manage absence like the Bradford scale, do you regard that as discriminatory against for people with mental health difficulties?
RACHEL PERKINS: I am not terribly familiar with the Bradford scale. Can you tell me what it does? Or just briefly?
FROM THE FLOOR: It's if you have one day off work then that is considered, that is counted as bad as say having a week or a so.
RACHEL PERKINS: Yes, I know.
FROM THE FLOOR: You can quickly tot up this score and then you get called in and
RACHEL PERKINS: Yes. I think most the public sector organisations have a very punitive view of sickness absence. In a sense it is an individual problem as an individual has to sort out. I have been most impressed by organisations like British Telecom who have the approach that actually we are not we are not going to use occupational health to weed people out. We are going to use it to actually support people in employment and we are going to see sickness absence rates not because of a problematic group of people, but that being a problematic area of the company. If you listen to Paul Litchfield and people talking I think that's really important, but I suppose I have a combined view on this. I don't think just because you're mad, you can stay off sick all the time. And I have known a number of organisations that have allowed people to do that and then got very cross and sacked them. I think in a sense if people are, for whatever reason, taking time off, we have got to actually look at why and how we can actually support that.
I think we very rarely make pre-emptive adjustments. If you have fluctuating conditions we should be making adjustments by reducing workload while the person is in that place, so I think those preventative adjustments while the person is having a bad time. I think also I have certainly found that some people if you plan annual leave and there are clever things you can do. I had a secretary who kept taking days off sick and it was doing my head in because I never knew when she’d be there and I needed her. I spoke to her and said ‘I need you’ and she said: Sometimes I feel I just can't come in to work. And we had a long conversation and she had a long weekend off every month. She needed some respite to be looking forward to and then she didn't take time off sick.
So I think it's a combination of things and I suppose I prefer to come at it not from the punitive of how do we stop people swinging the left, but from the how do we actually enable this person to contribute in this situation? Some of it some people will take time off sick. But I think we have got to be very much more pro active in thinking about supporting people in work rather than punishing them. So that would be my sole comment on that. Did that make sense?


FROM THE FLOOR: Thank you. Erm, how far do you think the social model can go, how much can societal adaptation to disability or impairment actually accommodate?
RACHEL PERKINS: The question was how far can the social model go. How far can society actually accommodate everyone?
Well, we don't have much of a choice in this. We believe in capital punishment, do we? The bottom line is we are all here; it is a question of where we are. I think it is a really important question because I do quite a lot of work in a special hospital, high secure hospital Broadmoor, and there are certainly people I work with there who I don't want living next door to me. That means if I am going to allow them to contribute to their communities, then I want them as a separate, living in a separate place; I think we have got to actually be real that there are going to be some people
FROM THE FLOOR: There are limitations.
RACHEL PERKINS: There are going to be limitations. But the question is really, they have to be accommodated as part of our communities. Those people are part of our communities; they are a product or part of it. Now where can they be in our communities? And we tend to have this all or nothing thing. You can't contribute unless you can live out there. I don't have any of you read the Surgeon of Crowthorne– a guy who did a lot on the Oxford English Dictionary did a lot of the work from Broadmoor, in those days he was allowed to have stuff brought in to him. He was working and contributing to that dictionary.
So, what I would be asking there is okay, what are the things how can that person be a part of our communities, not whether, because they are. I think the other thing to remember is that we have got to distinguish I think between mental illness and criminal acts. And I am afraid I am of the opinion that people with mental health problems are responsible for the crimes they commit. It is not a popular view. But there may be mitigating circumstances just as there might be in domestic abuse situations. But the reality is that we, I think we have got to draw a clear bit of blue water between mental illness and crime, because you see even if I believe that I am Jesus and I know that you are the devil, I still have choices. I don't have to kill you. I can run away. But if you look at the sorts of things we are talking about, in terms of people who are in places like Broadmoor, but actually people still have choices. Those choices might be really weighted in one way or another. But I believe we have to keep those two separate. So I believe we can accommodate all madness. I think we have got to think very seriously about some of the people who commit offences.
FROM THE FLOOR: Thank you.
FROM THE FLOOR: My name is Andrew. I am a member of the Cambridgeshire Alliance for Disabilities and also Lifecraft which is a local charity for service users. I think my question is a straightforward one some of us are getting over the hill. Some of us have been in and out of hospital several times. So my question is if we feel we are pushing against a very big brick wall, how would you set about breeding the next generation of movers and shovers to achieve the changes that some of us still dream of?
RACHEL PERKINS: Do you know I think we have already bred them. But the trouble is when I worked with young people in the first episode psychosis teams, please forgive me it is NHS jargon, people with first episodes of severe mental illness, and they are not interested in being service users. They want to be rock stars, brain surgeons, whatever. I think the activism of, dare I say, our generation has actually enabled those people to have a different view of their future. I think that is where we have won. I think the bigger challenge we face is a political challenge as to how we actually enable the world to allow those people to do the things they want to do and I don't know how we breed the next generation. But what I think we do is that we actually work across the disability diaspora. I am not interested in saying we have a separate mental health legislation and let's think about and the number of there is a lot of groups of people who have actually said: No, we are different. I think we have got more to gain by working together on a rights based agenda. I think there are people who are there who will fight those things, but I think they won't be fighting to be user representatives. I think they will be fighting to be bank managers. I think they will look different from our generation.

{Applause}.

FROM THE FLOOR: I mostly just wanted to say thank you. To echo an earlier comment, it has been very refreshing to hear a talk where the words used were relatively sensible. I don't know about anyone else but I certainly would if I am talking about mental health, if I am going to refer to myself as anything, it is as being slightly mad.
RACHEL PERKINS: Good.
FROM THE FLOOR: Whereas most other people are saying sort of grassed by the PC world that they sort of pick up all these weird words that I don't think anyone with such conditions would ever use to describe themselves. And to comment on something that I believe the first speaker from the floor said about different conditions, the amount of surprise I get as a pharmacist when I end up not being able to spell things because I am dyslexic, and are surprised that someone with such a disability could actually do my job and I think it would be nice if mental health could become sort of just a normal thing as yes, I also have depression, and yes, I am a pharmacist and doing quite nicely. It would be nice to see more of that.
RACHEL PERKINS: They let you loose with drugs!
FROM THE FLOOR: Yes, they do indeed.
RACHEL PERKINS: That wouldn't do, would it! {Laughter}. I think you're absolutely right and I suppose one of the things that scares me is that one of the ways in which we separate them from us is by a whole new language. Some of it's about ailments and things, but it is also using languages differently. So if you go in a mental health service you very quickly learn things about CPA. Don't know what it is, do you? The Care Programme Approach you will be told. Don't understand that either. The 3 words make sense: Care, programme, approach. It is actually the plan of how you are going to get treated and supported. But we are really good at creating those distancing things and I was at a seminar yesterday no, beginning of the week on Monday, in North Allerton, North Yorkshire and complaining about the use of language like that. And this psychologist got up and said: "But, Rachel, you are under estimating people; people can learn our language, you know, if we explain it!" And I said: "Why should they have to? Does Mr. Sainsbury make me learn his language in order to get in the shop?" But I think you're right I think we are very good at doing that, aren't we?
FROM THE FLOOR: Just to add to something that on a very local note, there is something in today's paper talking about the closure of Lifecraft and various other services and it says the Cambridge and Peterborough Trust say, the service is being axed, the, yeah, the service is being axed at the end of the month in favour of a country wide service, system, sorry, county wide system of GP referrals on to mental health pathways.
RACHEL PERKINS: Yes, we have got pathways and care clusters and P B Rs.
FROM THE FLOOR: What is the on the pathway, where it is going?
RACHEL PERKINS: I wouldn't ask if I was you! {Laughter}. It wouldn't make any sense. You have got of course to be very careful about which room you are sitting in. I was sitting in a room, meeting of managers and they were talking about ODs, OD. And being a clinician I thought they were talking about people killing themselves! They weren't. In that room they talk about organisational development! So they even use ...{Laughter}.... even use the same acronym next door to the medical director it was!
RAY JOBLING: One last, somebody right at the back, on the far left.
FROM THE FLOOR: Erm, you raised the question we need to draw a clear line between mental illness and crime, but I would contest that in the first instance we need to draw a line between crime and mental illness and that people whose behaviour is abhorrent and frightening people isn't a crime and it is so often treated as such at the moment.
RACHEL PERKINS: I think that's absolutely right. I think we have got to stop sticking the two in the same bundle. If someone is talking to a tree it is not harming anybody, but the number of times the police are called is phenomenal. I think you are absolutely right. But I guess both bundles we put in people we don't want very much to do with, aren't they? But I agree, I would agree with you, yes. Let's just separate them.

RAY JOBLING: I am going to thank Rachel, but I know she will forgive me if I mention two other thank yous before we finish. One is a big thank you to all of the {Inaudible} of the services, that's to say {Inaudible} Counselling Service, {Inaudible}... they don't often get the mention that they deserve, but the Annual Disability Lecture is where they are front stage. So thank you very much to all of those people who have in that way. I think too that I would like to pick out an individual. There are some people who are so central to activities that they are only known by one name. You don't even have to mention their surname and that name is Kirsty. It is like Beyoncé, Madonna, Kylie and Kirsty!
So thank you to her. There wouldn't be any lecture this year. There wouldn't be a lecture any year if it were not for the efforts of Kirsty. So thank you to her too.
{Applause}.

And Rachel, we have had distinguished speakers and we have had good speakers. Today we have got a distinguished good speaker and we are grateful for that. Early on I was looking for something that I might say at the end and you gave me a real opportunity because at one point you said: Is Rachel really all right? Is Rachel really all right? Well, yes, she is. Thank you very much.
{Applause} .
You're offered a drink, it is outside.

{Concluded}.