Diet & Mental illness by BipolarLab.com

Your Voice

The magazine for members of

winter 2005/06

The genes debate pages 8-9

Does diet make a difference pages 10-11 your voice

winter 2005/06

contents

personally speaking agm and the pringle awards

3-4

campaigns

5-7

genes debate

8-9

diet

10-11

advice service

12-13

news from northern ireland

14-15

volunteering

16-17

personal story

national voices forum

feature

20 21-23

news project profile

personal story

25-26

human rights

27-28

100 mile challenge

book review

letters

fact file

Rethink is the operating name of the National Schizophrenia Fellowship. Registered Charity number 271028. Working together to help everyone affected by severe mental illness, including schizophrenia, to recover a better quality of life. Your Voice is published by Rethink, 30 Tabernacle Street, London, EC2A 4DD and is sent to all members.

Front Door Line: Fax: Advice Service: Email: Website:

0845 456 0455 02380 210285 020 8974 6814 terry.hammond@rethink.org www.rethink.org

Copyright of all articles belongs to Rethink and to contributors. Views put forward do not represent the policy of the charity, unless agreed by the Board of Trustees. Editor:

Terry Hammond terry.hammond@rethink.org

Assistant Editor:

Ruth Bettie ruth.bettie@rethink.org

Editorial Team:

Deborah Armitage & Bill Watson deborah.armitage@rethink.org Ruth Bettie ruth.bettie@rethink.org Dominic Dowell dom.dowell@rethink.org

Personally speaking... A tough line in tough times

“I

t’s no secret that the NHS is facing a financial crisis. The news is full of health trusts facing shortfalls and making cuts to balance the books. The Health Secretary says she will bring in ‘turnaround teams’ to bring things back on an even keel. But making the budget balance could mean making the service worse. Mental health trusts are not top of the overspending league table. Most have been prudent and their finances are sound. But in several areas – Oxford, Cambridge and Suffolk to name just three – we are hearing about threats of major cuts, even the risk of consultants being made redundant. Facing a serious and politically embarrassing crisis, the NHS looks for any soft target to save funds. We must make sure that mental health is not seen as the easy option.

Rethink members are already campaigning locally where cuts are threatened, getting questions asked and publicity raised. At national level we have started a wider campaign, with press and broadcast media coverage. Our campaigns team have called for the Minister to order a full investigation, and to protect mental health spending. It is a desperately disappointing situation when so much has been achieved over recent years, and when there is such potential for further improvement. In early 2006, we expect the Government to launch a new approach to primary and community care, bringing help closer to home and giving better support outside hospital. And we are also seeing the start of pilot projects to test how access to psychological therapies can be improved – therapies which are highly valued by people with mental illness. But tough times demand a tough defence. Rethink members have painstakingly worked for improvements in mental health care over the last few years. We must not let that progress be reversed. Let’s support our colleagues in the areas under threat: writing letters, raising awareness, seeing MPs. The hope and courage of the young people I met when visiting Rethink’s early intervention service in Dorset a few months ago, showed the true value of the new approach to severe mental illness. It was heartwarming and inspiring to see the difference it can make. It’s worth defending and Rethink will be doing exactly that.

”

Cliff Prior Chief Executive, Rethink winter 2005/06

your voice

agm AGM and Annual Members Day

his Year the Rethink Annual Members’ Day was held in London at One Whitehall Place. The theme of the day was Speak Out Speak Loud, focusing on Rethink’s anti-stigma campaign. Over 160 members attended the all-day event.

popular parts of the day was Cliff Prior’s Chief Executive’s Address. The day proved to be a great success with the majority of delegates feeling that they had learnt something new about Rethink.

• Cliff Prior giving his annual address

The Day consisted of a conference in the morning which saw presentations from two guest speakers: Professor Graham Thornicroft (Stigma or Discrimination: what can we do?) and Gary Hogman from SHIFT (“from here to Equality” – 2004-2009 – A Strategic Plan to Tackle Stigma and Discrimination on Mental Health Grounds). Rethink’s Annual Pringle Awards finished off the morning’s activities. After lunch delegates attended one of three workshops focusing on Media, User and Carer Involvement a chance for members to discuss issues surrounding stigma with Rethink in the group area. As ever one of the most

• Professor Graham Thornicroft The Rethink responding to a questions. Rethinks Events team Jo Loughran in the background would like to thank all of those who attended and those who were involved in making the event such an enjoyable and successful day.

Pringle Awards

n award ceremony to celebrate the best of Rethink’s work across services, groups, campaigners and artistic expression was held at the AGM in London. The annual Pringle Awards, presented in honour of Rethink’s founder, the late John Pringle, celebrate outstanding achievement and were presented during the AGM held at Whitehall Place on 12th November. Hosted by Director of Public Affairs, Paul Farmer, and presented by Chair of the Board of Trustees, Robert Banner. The Pringle Awards honoured a wide range of innovative and worthy work within Rethink. Service of the Year 2005 was awarded to Rethink Employment and Training, Hadleigh, who coordinate three unique services which help people experiencing mental illness in their recovery journey and into finding employment.

• Rethink’s Geoff Lindsay in action your voice

winter 2005/06

In Mr Pringles Pet Supply shop, service users gain valuable work experience in a fully functioning retail 3

agm setting which caters for the local public’s pet supply needs. Meanwhile, next door, the Rethink Publications workshop offers service users the chance to take and dispatch internal and external publication orders. Thirdly, the fulfilment workshop has excellent links with local companies and undertakes jobs on a contracted basis. The scheme has been highly successful and of the 100 users who engaged with the service in 2004, twenty are now in full or part time employment, with a further thirtyeight undertaking voluntary work or a work placement. Sessions with service users last for two hours and this service provided an incredible 121,000 sessions last year. Highly Commended in the Service of the Year category was The Art Shed,

and DJs have gone on to create diverse art works ranging from paintings to poetry. The award for Campaigner of the Year was presented to Peter and Sue Goff who were nominated by Rethink’s National Advice Service. Following the tragic suicide of their son Tim in a secure hospital, the Goffs have tirelessly campaigned to highlight the risk of in-patient psychiatric hospitals and, in particular, the dangers of suspended ceilings for suicidal patients; a causal factor in their son’s death. Through their campaigning work they discovered that the NHS Estates Hazards Alert System has recognised the risks of suspended ceilings and alerted Trusts in Northern Ireland but not in England. Thanks to the Goffs, this has now been rectified. The highly commended accolade for Campaigning was given to Barry Tebb from Surrey, who has campaigned locally and nationally for improved mental health services as well as being an accomplished author and carer.

• Campaigners Peter and Sue Goff

Eastleigh Court: an innovative project enabling people experiencing longterm mental health problems to redefine themselves as artists. The Art Shed was formed as a creative space to facilitate the project and service users which include artists 4

Highly commended in the Arts and Poetry section was Brenda Williams, who despite a diagnosis of depression, is an accomplished poet.

Dave Weston and Central Point scooped the Art/ Poetry award for the “Homesick” photography exhibition in Portsmouth. Ten service users from Central Point, Rethink’s day centre for homeless people, were invited to create an exhibition of their view of life on the streets and were given disposable cameras. The exhibition was highly successful and Dave Weston’s photographs were particularly commended.

• Members of the Merton group

Congratulations also to the winner of the Group award: The Merton and Sutton Group. Run by a husband and wife couple in London, The Merton and Sutton Group has provided support for carers for many years. This year, it extended its support to set up a group for users which meets every week. It is highly regarded both as a mutual support and campaigning group. Rethink are proud to honour these exceptional services, groups and individuals and their inspirational work.

Useful links Central Point website: www.centralpoint.org.uk Brenda Williams’ poetry can be found at www.brendawilliams.co.uk Barry Tebb’s work can be found at www.barrytebb.co.uk winter 2005/06

your voice

LUCY WIDENKA highlights the seriousness of the forthcoming cuts in the NHS and how we must stop mental health being the “soft target”.

CAMPAIGNS STOP PRESS Rethink has since received a response from the Department of Health (DH) to our request for an investigation into the cuts. The DH are now contacting all Strategic Health Authority finance directors requesting more information about their current financial situation, which will allow the Department to analyse the situation in more detail.

Campaigning against the cuts

fter learning about worrying reports of large-scale cuts to mental health services from many areas of the country, Rethink has been campaigning at a national level and has been in contact with several local activists who are running their own campaigns. We are extremely concerned about these cuts and have sent a letter on the issue to Rosie Winterton, Minister of State for Health Services, and Louis Appleby, National Director for Mental Health, asking for action on this issue. We have heard, for example, about the following cuts: – In Oxford, cuts include £1.65 million this year with the loss of a specialist self harm service, seven consultant psychiatric posts, seven senior house officer posts and a specialist registrar. – Cambridge will lose £3 million of funding over the next three years to include job reductions, ward and service closures. We believe that this is a national problem in which mental health money is being used to make up other deficits – but we need local examples to prove this. We are still looking to gather as much evidence as possible from around the country, so please tell us about any cuts to services in your area that you know about. We need to know: 1. Geographical details – e.g. Barnsley 2. Level of cuts – e.g. £200,000 this year, £500,000 next year 3. Source: e.g. local media story, LIT meeting, confidential PCT minutes, or whatever.

Families not at fault

ome of you might remember the e-campaign we ran a few months ago in response to a series of offensive articles Oliver James wrote in the Observer. Oliver James claimed that parental abuse and neglect is a key cause of schizophrenia: “probably a far more significant factor than genes”. At the time, we also wrote to the Observer and Oliver James himself to request a meeting. While the Observer readers’ editor Stephen Pritchard acknowledged some of our concerns in one of their articles, unfortunately, there was no response from Mr James. But the story goes on. Oliver James has recently written a similar article in the Guardian (“Think again” Saturday 22nd October 2005) where he uses new your voice

winter 2005/06

Please send as much detailed information as possible to: Lucy Widenka, Senior Campaigns Officer, email lucy.widenka@rethink.org, fax: 020 7330 9102, post: 5th Floor, Royal London House, 22-25 Finsbury Square, London EC2A 1DS. We are calling on the National Director for Mental Health to conduct an investigation into this issue and develop an emergency plan to overcome the crisis. In the past, information from Rethink has secured and repositioned budget allocations, for instance a ring-fenced £30 million to secure changes in line with the National Service Framework. We know that this approach can work. Please also write to your MP to tell him or her about your concerns. We have ourselves had contact with a number of MPs, who are raising the issue in parliament as a result of our campaign – we have also been in touch with the new Tory leader David Cameron who is investigating cuts in his area. We have also had a lot of media coverage for our campaign, on local radio and TV, such as BBC Radio Devon, BBC Radio Suffolk, ITV Central News, BBC Bristol, News And Star, Carlisle, as well as BBC Online. To find out more about our campaign, click on the ‘Mental Health Budget Cuts’ link on the News and Campaigns section of the Rethink website www.rethink.org.

research to back his controversial views. In response to this, we wrote another letter inviting him to meet us and meet some of our service users and carers as well. We are also talking to the Guardian about setting up an event involving us and other mental health professionals. We are very keen to get hold of the piece of research mentioned in his article to see exactly what it says, and check how it has been presented to help his argument. The research was not available at the time. In the meantime, you might want to post your views on the Guardian’s letter/debate page: www.guardian.co.uk/letters/story/0,,1599707,00.html You can also check a good article by Dr Thomas Stuttaford who has written a balanced piece on the subject. www.timesonline.co.uk/newspaper/0,,1741845696,00.html Lucy Widenka 5

campaigns Early psychosis declaration

t’s an unjust world that, through ignorance, watches young people descend into absolute confusion and total distress, leaving their lives and their families lives changed for ever. The Early Psychosis Declaration is a vision for the future and being a founder member of the declaration I hoped the leaflet would be a way of sharing that vision in order to encourage anyone who picks it up to take action. We can all choose to act on one of the suggestions listed on the back of the leaflet while remembering Dr Benedetto Saraceno’s words (Director of Mental Health World Health Organisation): ”We need committed people; we need grass roots people, because as indicated in the suggested actions of the Declaration this is a task for all of us.”

asked a carer how her son was. “He’s very happy” was her reply. I asked another carer why she was so optimistic. “I was told it’s just a psychotic episode – he will get over it.” This attitudinal shift marked the climate in which the event took place so when the over dinner question came, “If I was to tell my story, this is what I would want people to hear and take away from it,” ideas came fast and furious, initially captured on a “Hope Board” for all to share. It was therefore with much energy

How can I support the Early Psychosis Declaration? Find out if you have a Early Intervention Team – If not – Why not? Contact your Early Intervention Team and ask how they intend to support the Early Psychosis Declaration and how they are engaging families. Direct them to the contact details below for more information. Write to your Primary Care Trust and ask what plans there are for practitioners to be trained in early psychosis. Contact your local NIMHE Development Centre and ask how you can be involved in supporting the Early Psychosis Declaration.

In Newcastle grassroots people, carers and practitioners in the North East early intervention teams met on the 14/ 15th November 2005 to “hothouse”: to explore how we could begin to engage and support families, as this is one of the five objectives set out in the Early Psychosis leaflet. A “hothouse” is about creating a climate where seeds or ideas can be planted. We were joined by Rethink/NIMHE National Early Intervention Programme Leads, Dr David Shiers and Dr Jo Smith. Bringing together long-term carers and carers within EI teams was both a positive and uplifting experience. I 6

and optimism that workgroups focused on materials that services need to make available for families, practical ways of fully involving families in order to develop partnerships within EI services and how to connect families together to form a network of Early Psychosis champions. “I feel it confirmed why I work within EI by connecting with others,” said one practitioner; another felt “inspired”. By the end of the event there was no doubt in anyone’s mind that partnerships had already begun to develop and that networks needed to be developed. The reason? “Families tell it as it is, untainted by diagnostic criteria or service constraints – for me this hothouse got straight to the heart of the problem.” (David Shiers.) If you would like more information about the Rethink/ NIMHE National Early Intervention Programme or copies of the Early Psychosis Declaration Leaflet, please contact the Programme Manager, Marcia Thorpe, on 0121 522 7037 or email earlyintervention@rethink.org. Sheena Foster Founder Member of the Early Psychosis Declaration Campaign winter 2005/06

your voice

STOP PRESS After Rethink’s concerted media campaigning, the Home Secretary, Charles Clarke, admits that the down grading of cannabis caused confusion about health risks.

campaigns

Update on Rethink’s cannabis campaign

t the beginning of 2005, after considerable work by the campaigns and communications department, we had not one but two successes in our cannabis campaign. Firstly, the Department of Health commissioned a review of evidence on cannabis use and the onset of mental illness. A DoH spokesman went so far as to state: “There is medical clinical evidence now that there is an important causal factor between cannabis use and schizophrenia – not the only factor, but an important causal factor. That is the common consensus among the medical fraternity.” Secondly, the Home Secretary, Charles Clarke, asked the Advisory Council on the Misuse of Drugs (ACMD) to look again at the evidence and to reconsider the question of cannabis classification. It was the ACMD which originally recommended, in March 2002, that the classification of cannabis be

changed to class C. The Council is made up of experts in drug policy, academics, health practitioners and criminal justice professionals. Rethink contacted the Council repeatedly to express our desire to give evidence. We submitted written evidence consisting of a literature review on the research on cannabis and mental illness, and an analysis of the report of Rethink members’ experience with cannabis, whether as service users or carers. We recommended that the classification of cannabis be unchanged as evidence indicates that the legal status of the drug does not impact significantly on use. Any change of classification would also be very expensive and we argued that these resources should instead be spent on health education, within schools, among the public at large and within mental health settings. Alongside the British Lung Foundation and the drug think tank Transform, we were one of only three voluntary organisations, and the only mental health organisation, asked to give oral evidence. Other witnesses included mental health and drug researchers, scientists and Marcel de Kort, a policy adviser at the Dutch Ministry of Health. This is in itself a great victory for Rethink – it indicates that we are considered to be one of the experts on the issue. Rethink’s campaigns team found one service user who was prepared to speak openly about his experience with cannabis use and psychosis. His testimony was a key part of our evidence. He spoke about the laissez-faire attitude towards cannabis at his school and its widespread availability. He also explained that his encounters with the criminal justice system had not persuaded him to reduce or stop his use. Finally, he spoke about visiting his GP to discuss his mental health problems, and his GP advising that cannabis use had nothing to do with them and that if anything cannabis would be helping him to relax. One Council member congratulated us on our presentation, saying it was the best of the day. The Council is expected to make its recommendations before the end of the year. We hope that they will recommend a very wide public health education campaign to ensure young people and their families know of the risks of heavy cannabis use. We would like to thank all the service users and carers who have written to us with their testimonies of their experiences. Rethink exists to give voice to its members’ experiences and this was another excellent opportunity to do this.

your voice

winter 2005/06

genes debate

DR PETER CHADWICK highlights the dilemma that society could be faced with, as advances are being made in the research of human genes. In this powerful piece Dr Chadwick paints a possible scenario parents could face in the year 2045.

If my parents had known

“Is that it?... I mean he’s not going to be queer as well is he?!” he throws out, sounding desperate.

It’s early November 1945 but the Western world has the genetic and medical knowledge (and health systems in place) more likely in November 2045. It is just a few weeks since I was conceived; my mother and father brave the cold weather and arrive at the local hospital DNA Assessment Unit to hear the results of predictive DNA tests done on the embryo that is me. They walk in to see Dr Stead who has a nurse and a counsellor with him.

Dr Stead is taken aback. The eyes of the two men meet. The doctor speaks slowly: “The rating for bisexuality was rather higher than the average,” (my father’s eyes widen into a stare), “but there’s also a very strong indication of tendencies to fetishism and transvestism.”

his is a story where the twist really comes at the beginning.

All of them have rather serious and severe expressions on their faces. “Hello Mrs Chadwick... Mr Chadwick... do sit down, nice to see you. I’m sorry you’ve had to wait so long, the demands on departments like this are very large, as I’m sure you realise.” “Yes, of course doctor,” says my mother with a benevolent expression. “Well, we do have the DNA results, they came through yesterday.” “Erm, is everything alright doctor?” asks my mother, noticing their frowns and unsmiling expressions. My father sighs in anticipation of trouble. The counsellor and nurse both adjust themselves in their seats. “Well, first of all the embryo is a boy...” “Oh, right,” says my mother, “wonderful.” “We’ve ruled out Down’s Syndrome, we can tell you that... but I’m afraid there is rather a cocktail of other potential problems at quite a high level of probability”. “Oh dear, oh dear,” tears appear in my mother’s eyes, she looks down. “It’s our age, I’m 43 and George here is 45... we’ve been very worried.” “Tell us the worst doctor,” says my father, moving uneasily in his chair. “Well...” (the doctor takes a deep breath) “There appears to be a sixty times increased risk of schizophrenia...” “Oh my God!” exclaims my mother, “No! no! It must be a mistake!” “No, I’m sorry, it isn’t,” he replies, “and I have to tell you that there also seems to be a comparable risk of mood disorder, mania, hypomania or depression or some combination of them.” “Oh God, no!” mother shouts. She buries her face in her hands. “So the kid’s going to be mad?” asks my father solemnly. “I’m terribly sorry to give you this news, it must be very upsetting. I’m so sorry. Regarding psychosis, it’s not inevitable but probable, it depends also on his life experiences and what he makes out of them. It depends a lot on how you treat him.” My mother buries her face in my father’s chest, he tries to comfort her, and then says: 8

My mother looks up, eyes like saucers. My father erupts: “That’s it!” he exclaims, “not only is he going to be a nutter but a bloody pansy with it!! No way! I’ve heard enough!” He makes as if to leave. “George! He’s our child, he’ll be there in my tummy! How can you talk like that?!” my mother shouts at him, absolutely aghast. “He’ll never survive school, Edie! He won’t survive! Not in Manchester, not anywhere; you know what people are like! That’ll be enough stress to drive him mad!” “We can move, perhaps move south?” “We’ve just won the war, we didn’t beat Hitler with people like this!” “George! It’s our baby!!” My father is gripped by terror. He brushes my mother’s concerns aside. “I’ll be its father, look how it will make me look! I’ll never be able to show my face in the pub again!!” “Yer just thinking of yerself! What does it matter, these things?!” “Mr Chadwick,” says the counsellor calmly, “you must think of the child.” My father nods and looks down, embarrassed at his outburst. “Are you saying you want us to abort this embryo?” asks the nurse. “Is that it or is there anything else you haven’t told us?” asks my father. “Er... well... the transvestism is associated with a constellation of obsessive-compulsive traits... it often is...” “So it gets worse?!” father complains, lifting his arms in despair. “Well... erm... the obsessive-compulsive tendencies are strong but in life that can have some advantages... reliability, organisation, love of order... that kind of thing.” “And some disadvantages?!” my father wails. “Well it can mushroom into obsessive-compulsive disorder, some people have developed tics...” “Our other son has a tic doctor,” my mother adds softly, very concerned. She goes on: “He has a laughter tic, it’s terrible, it isn’t funny at all, kids would laugh but it’s terrible... he can’t control it... had it since he was 21.” “Erm... yes... it could be that tics will develop then, it’s a possibility.” “Not two of ‘em in the bloody house!! I couldn’t stand it! winter 2005/06

your voice

genes debate One is more than enough!” my father throws back, now quite beside himself. “There are a few other propensities much higher than average... there seem to be strong tendencies to arthritis, diabetes and heart disease...” “It’s a mess!” shouts my father, “Admit it! The thing’s a bloody mess! Is there nothing positive?!” “Well... I have to admit it is a very very low quality embryo. It may become reasonably intelligent, perhaps a little creative... I can’t say more than that.” My mother breaks down in floods of tears, the nurse goes over to comfort her. “What in your heart of hearts do you want to do, Mr Chadwick?” asks the counsellor. “I don’t know,” my father sighs, obviously devastated. “Is it all genetic? Is genetics everything?” he asks. “The only trait or condition that doesn’t have a genetic component is cerebral palsy. That seems to be an intrauterine effect,” the doctor admits, a tinge of sadness in his voice. He goes on “You’re both in your mid-forties and I believe both of you smoke quite a lot?” “Yes, we do,” my mother confesses with a guilty expression. “Yes... well you see that doesn’t help.” “What shall we do Edie? It’s there inside you, I’ll go along with what you decide.” After a pause my mother lifts her head and says tragically: “You don’t want him, do you George?” she speaks softly and tearfully. My father shakes his head and grits his teeth. “No... no I don’t... it sounds more trouble than it’s worth.” All in the room exchange glances. There is a portentous silence. The doctor speaks first. “On that kind of issue, Mr Chadwick,” says Dr Stead, “there is the government advice on this... I know this sounds terribly crass and mercenary but the demands on the NHS now are huge as you know. An embryo of this low quality... well...” “Go on! Say it!” shouts my mother, “You want us to kill him don’t you?!” “... the fact is we are advised to recommend termination when as many problems as this seem likely to materialise. The NHS just can’t afford it... You must understand... we have to look ahead.” “Are you saying that you are recommending termination?” queries my father. “Yes I am.” “And if we refuse?” “Then I’m afraid you will have to bear the medical costs that your child incurs.” “So we’ll have to go private because you won’t treat him?” “I’m afraid not... given that we have this technology we have to make it pay... we just can’t afford the burden that this embryo predicts... the state just can’t shoulder it.” My father looks to the skies, ponders and then exhales heavily. “Edie, we can’t afford it,” he says. your voice

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“No, I know,” my mother looks forlornly at the nurse. “If you try again the outcome might be quite different” the nurse says, reassuringly. “Have another try... it could work out a lot better.” She smiles and puts a hand on my mother’s arm to comfort her. “The trouble is,” says Dr Stead, “that if we modify the DNA of this embryo to minimise these problems we may, with such a cocktail of abnormalities, cause a lot of unwanted side effects. Our knowledge of gene interactions is still unsatisfactory in my view.” “Yes, I understand,” says my father, emotionally exhausted, and seemingly resigned to the inevitable. All rise and shake hands. There is an atmosphere of relief that a problem has been solved through the power of reason. My parents decide on termination; the following day the embryo is burned. It only takes a few minutes. As the 21st century unfolds it seems to me likely that information of this kind on behavioural traits, sexual orientation and potential mental disorders will increasingly become available. We may dread it and resist it, but it is highly probable. Even as I write in 2005 printouts to individuals of the likelihood of them developing various physical disorders can already be obtained, but I think the emotional impact of more sensitive and intimate information, of the kind presented here, despite our experience with genetic counselling, has been vastly underestimated. What is the best way to present such information? At what point in the narrative above do men, as opposed to women, decide to abort the embryo, if indeed they do at all? Is information of this kind best presented by a doctor or a behavioural scientist? Does it matter if they are male or female? Is it best to actually have a nurse and/or counsellor – or indeed a psychologist – present or can the whole procedure be done quite impersonally and mechanically? Should it be permitted to be so done given the emotional implications of information like this? I don’t believe we have really thought about these things enough and yet we are careering towards a future where scenarios such as that described in this article are only just over the horizon. If people are not fully informed of the advantages as well as the disadvantages of various “conditions” and ways of being, and if we gradually lose the respect for life itself simply in the interests of having “high quality embryos” (whatever that might mean), we are going to lose the diversity of life, cheapen ourselves and end up with a bland, grey society which will kill the creative spark and the empathic talents that keep our culture and our world vibrant, loving and dynamic. The ghost of Hitler and Nazi eugenics will return but in slow, insidious, subtle ways that people, over the centuries, may hardly notice. And all in the name of... what? All in the name of having a nice trouble-free life. 9

feature

Does diet make a difference? RUTH OHLSEN, Clinical Research Nurse from the National Psychosis Unit, highlights some fascinating research.

Diet and mental illness: can it make a difference?

ainstream medicine and psychiatry attest that drugs are the mainstay of psychiatric treatment and, indeed, this appears to be borne out by the results of a multitude of well controlled clinical trials. Psychosocial interventions such as psychotherapy and cognitive behavioural therapy are also widely accepted as either stand-alone treatments or as useful adjuncts to pharmacotherapy. In addition to these scientifically “approved” treatments there is evidence that some “natural” remedies such as homeopathic mixtures, St John’s Wort, evening primrose oil and fish oil treatments may be effective in alleviating the symptoms of mental distress in a variety of conditions which include schizophrenia, bipolar disorder, depression and anxiety spectrum disorders. Are there simple ways of improving mental state and alleviating the burden of psychiatric disease? We know that vitamin deficiencies are positively associated with a number of physical diseases, such as scurvy, beri-beri, anaemia and Alzheimer’s disease, and that improving the quality of dietary intake may positively affect outcome. There is no doubt that a diet rich in fish oils is cardioprotective, and is effective in maintaining healthy levels of cholesterol and lipids in the blood. It is also well known that many people with mental illness eat a poor diet, characterised by high fat content, low fibre content, an excess of processed foods, fizzy drinks, caffeine, tobacco and alcohol. This may partly be due to straitened financial circumstances, or reduced ability to plan, organise and cook healthy meals, but such a diet is detrimental to overall well-being and may negatively impact on physical health and self esteem. It may even 10

have direct effects on mental health: a recent study found that high intake of refined sugar and dairy products predicted a worse outcome in two years for people with schizophrenia. Additionally, many antipsychotic medications prescribed today increase appetite and cause weight gain, which increases the risk of developing disorders such as diabetes and cardiovascular problems. Much controversy has surrounded the question of whether diet may or may not influence the course of mental illness. There are abundant books and internet sites dedicated to the notion that particular diets may significantly influence health and well-being. Some of the information available is well-balanced and based on sound principles and an awareness of basic nutrition, while others promote “fad” diets, or diets based on personality types or blood groups, issuing strong warnings against eating anything not right for your “type”. It is doubtful that the latter group are of any value in preventing illness or promoting well-being. The late Dr David Horrobin became both famous, and infamous, for his claim that omega-3 fish oils improve mental as well as physical health. While he was previously regarded in some mainstream circles as a crank, a growing body of evidence is emerging to show that these substances may confer significant benefits in a number of psychiatric disorders. A high percentage of people suffering from schizophrenia, depression and attention-deficit hyperactivity disorder (ADHD) show reduced levels of omega-3 in their blood. The active ingredients that appear to influence mental health in omega-3 fish oils are eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA).

A Cochrane database review of polyunsaturated fatty acid supplementation for schizophrenia concluded that while further largescale, well conducted clinical trials are needed to establish the extent of any beneficial effects, there does appear to be evidence that fatty acid supplementation, either given alone or as an adjunct to antipsychotic medication, has a positive effect on mental state in schizophrenia. Fish oil supplementation has been shown to increase remission time in bipolar disorder, to alleviate symptoms of depression and improve function in borderline personality disorder. Combinations of omega-3 oil and omega-6 oil (linoleic acid, evening primrose oil) have been shown to be effective in reducing symptoms in ADHD. Supplementation with fish oils is safe and well-tolerated, the main reported side effect being diarrhoea.

Glycine supplementation Glycine, an amino acid involved with glutamate transmission in the brain, has shown to be effective in reducing negative symptoms and improving cognitive function in schizophrenia. Trials have recorded significant improvements across these domains when glycine was given as a dietary supplement adjunctive to antipsychotic medication. The main side effects reported were nausea and vomiting at high doses, which can be avoided by initiating treatment with small doses and tapering upwards slowly.

Other diets for mental illness Gluten-free diet – Coeliac disease, which affects the digestive tract, is a condition wherein the body cannot digest gluten, a protein found in wheat and other grains. Sufferers experience diarrhoea, weight loss and malnutrition. Patients who eat a diet free of gluten remain well and experience no symptoms. There may winter 2005/06

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feature be links between coeliac disease and schizophrenia, as people with coeliac disease are said to be up to three times more likely to develop schizophrenia than the general population. It has been suggested that a gluten-free diet may benefit people with schizophrenia – several trials have been conducted, but the results have been inconclusive, some groups responding well to a glutenfree diet, and others experiencing no reduction in symptoms. Mega-vitamin supplementation – In the 1950s, the practice of treating mentally ill people with massive doses of mega- and B group vitamins became trendy. A number of trials were conducted, but they were generally badly planned, involved only very small numbers, and the results were of very limited scientific merit. Claims that mega-vitamin therapy can cure schizophrenia have proved completely groundless, although this “treatment” is still touted by some practitioners today.

Would you like to influence the development of Rethink in your Region? If so... get involved! Rethink is looking for enthusiastic members to join our eight Regional Reference Groups. These new groups were created in the early part of 2005 and are the governance link between Rethink’s Board of Trustees and our members at a local level. They are also responsible for: • Monitoring Rethink activity within the region • Setting regional priorities in conjunction with the staff team • Contributing to Rethink campaigns • Overseeing the group registration process for the region • Electing the Trustee and national committee representatives for the region The Regional Reference Groups have been working for a year now and we have identified vacancies in some regions.

Conclusions It seems that some supplements such as omega-3 fish oils (EPA) and glycine can be effective in alleviating the symptoms of mental illness in a variety of disorders. When taken as prescribed, these treatments appear to be safe and well-tolerated, and may be a useful addition to preexisting medication. Although claims exist to the contrary, there is no real evidence that any particular diet is of benefit in treating mental illness. However, a healthy, balanced diet rich in fresh foods and fish is undoubtedly beneficial in maintaining good physical and mental health and promoting holistic well-being.

Is this for me? What experience is needed?

Suggested Reading:

What do I do next?

Schizophrenia.com – “Complementary Schizophrenia Treatments” Diet-Brain Connection: Impact on Memory, Mood Aging and Disease. Edited by Mark P. Mattson (Springer) Eat Yourself Happy. Dr Michael T Isaac and Dr Maria B Isaac (Carroll and Brown Publishers Limited) your voice

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Your own experience of mental illness, as a service user or carer, is what is important. You may also have a particular interest in mental health or a general interest in Rethink’s work.

What support and training is offered? All new Reference Group members will be invited to attend an Induction Training day to learn more about their role and the purpose of the group. We aim to offer all members on-going support, as required, to enable them to carry out this important role.

Will I be paid? Travel and out-of-pocket expenses will be met. In line with charity law, no member of our governance committees is paid a fee.

We are now inviting members to register an interest in joining their Regional Reference Group. Further information and a registration form can be obtained by contacting Matthew Wilkinson: telephone: 01924 433218 or email: matthew.wilkinson@rethink.org

national advice service

Rethink’s National Advice Service is one of the most highly respected services that Rethink provides and has helped thousands of individuals and families over the years. In this article we look at the work of this excellent service.

Advice – the answer to social exclusion?

t’s now well recognised that good quality advice plays a vital part in tackling social exclusion. The government made this clear in last year’s report into Mental Health and Social Exclusion. It’s easy to see how advice on benefits can make a significant difference to people on low incomes, and that the extra cash can reduce stress and anxiety and even improve the prospects for recovery. But good advice can do much more. It can help service users get access to services which were being withheld, bring about improvements in care, treatment and social support, and challenge discrimination by employers. It can help new carers to understand the strange new world they have entered where information is rationed and where they may even be blamed for a relative’s illness.

“early this year while searching the net, I came across your organisation. I sent an email and got a very helpful reply. Since then, my husband and I have rung for advice and got exactly the help we needed…at last the future is looking brighter for our family.” (carer, 2004) Sadly, recent research has shown that people with mental ill health are the least likely group to take action to deal with the problems facing them, usually because they think that nothing can be done. However, an experienced adviser can provide not only the information which a service user or carer needs to tackle their problems, but also the confidence to use it and any necessary help in drafting letters or making complaints. According to Rethink’s National Advice team, there’s not much point in having rights if you don’t know what they are or how to use them!

So what does the Advice Service really do? Every month, the team responds to around a thousand enquiries from users, carers and professionals. Some of these are quite basic, coming from people who are new to the mental health system, while others will need expert help over several years, perhaps leading to an inquest hearing or an investigation by the NHS Ombudsman. One of the problems we hear about most often comes from people who are finding it difficult or even impossible to get a response from the mental health services. Even people in crisis asking for admission to hospital are sometimes turned away because there is no bed available or a crisis team feels that the person should cope at home. The government’s “choice” agenda seems to lack any real meaning in the mental health field. But the advice team believes that good quality care and treatment 12

should be just as important an entitlement as the right to welfare benefits.

“how grateful we were to Rethink for their knowledge and information and that we were given hope when it was most needed. To use your advice service was our lifeline.” (service user, 2004) Of course, people with practical problems involving benefits, debt or insurance can go to Citizens Advice for help, but sometimes these problems are better dealt with by an adviser with a good understanding of mental health problems, who knows why some service users get into debt, and can work out why a DLA application failed. They need to be able to explain to a benefits clerk why someone’s housing benefit form has been left unopened on their doormat for months on end. We use exactly the same “problem management” system as Citizens Advice but we use it in the very specialised field of mental health, so a good knowledge of medication, side effects and other treatment options is also necessary. We are sometimes asked about the difference between our service and those available from Rethink’s local helplines or other organisations like Saneline. The answer is that we focus on helping our clients to tackle their problems by providing whatever information they need and talking through their possible options, providing practical help if necessary, sometimes over months or even years – this is what defines advice work. Our advisers must be highly trained and most of them come to Rethink with a wealth of relevant experience and expertise. It’s a different service from what’s available from most helplines, which usually focus on emotional support and local information, rely mainly on voluntary staff and provide help out of hours.

“We are at the moment in the throes of an Ombudsman investigation and I am certain that without the help of Rethink we would not be at this stage. It has been a long and at times stressful experience for us all but having the adviser at our side particularly at the inquest and in our subsequent fight to achieve justice for our brother’s death has been invaluable.” (brother, 2005) Many of our enquiries come from doctors, nurses, occupational therapists and social workers who may winter 2005/06

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national advice service simply want to know about restrictions on driving for people with mental illness, or the latest case law on the seclusion of detained patients. Sometimes professionals suddenly have to adapt to the new role of carer because a close relative has become mentally ill. The experience enables them to gain a very different perspective on the mental health services and far more understanding of the user and carer perspective. Many Rethink staff, working as carer support workers or advocates, contact us for information or help on an issue which is new to them, but something well known to the advice team – for example whether people who have been detained under section 3 are allowed to enter the USA. And there are also a surprising number of enquiries from employers, who may be concerned for someone in their workforce who has recently become a user or carer and how they can help, or who wants some detailed information about the sort of adjustments they should make under the Disability Discrimination Act.

What else does the Advice team provide? Information and publications The team has produced many of Rethink’s most popular and widely distributed publications, like Caring and Coping, for new carers, and Only the Best, our guide for service users who want to get the most appropriate medication. And our Information Officer has produced over sixty factsheets on every subject from coping with hearing voices to getting access to medical records. We try to make sure that our information answers the most common questions and helps people to cope with all the practical problems we know they face. Unlike the more traditional books and leaflets written by professionals, our information recognises the strange reality which exists in mental health – GPs who won’t accept information from carers, government agencies which don’t think it’s appropriate to publish information for service users about the Court of Protection or accept blood donations from people with a diagnosis like schizophrenia. Sadly, one of our most used factsheets is “Getting Help in a Crisis”. “Please circulate this email as widely as possible within your organisation, so as to inform the people in it of the great big difference which they have made and are continuously making to the lives of people whom they have most probably never contemplated” (email from European user of website). We’ve also produced a range of practical toolkits, like the one on “Dual Diagnosis”, recently revised with some help from Turning Point and published with Home Office funding. The latest, our “Diversion Toolkit”, was funded by the Department of Health and is a guide for Rethink your voice

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staff and others on how they can help to divert someone who has become involved with the police, courts or prison to health and social services. Over the years, the team has developed important links with experts working in specialist fields like law or psychiatry who support our work by providing our clients with second opinions, or helping us to tackle difficult cases, perhaps by providing reports at no cost or representing families at inquest hearings.

“many thanks for your prompt response. After almost nine years with Rethink, I know they are always there when I need them. It’s very reassuring.” (thanks from user for advice on benefits) Spotting new issues The team also has a very important role in recognising new and emerging problems which will often become campaigning issues for Rethink, as the “drug rationing” issue did in the 1990s. Recently, we have become concerned about the new Crisis Services, a requirement of the Government’s National Service Framework, which now control hospital admission. There seems to be a wide variation in the way in which these are being implemented, and a lot of scope for things to go wrong unless there is close liaison with the other community teams and very good communication between them. Some of our recent inquest cases have shown how tragedies can result if crisis teams decide that it’s appropriate to return someone feeling suicidal to their high rise apartment instead of finding them a bed where they can be provided with support around the clock. So in the autumn, we held a seminar on the subject in London with an expert speaker who heads a crisis service and invited all Rethink staff. Providing evidence Our daily work with users and carers enables the Advice team to provide plenty of evidence to support our responses to consultations, Rethink campaigns and to influence Rethink policy. It’s the personal experience of users and carers which shapes our views, determines what we publish and ensures that the organisation is always close to grass roots reality. The National Advice Service can be contacted by phone on 020 8974 6814, by email advice@rethink.org, by post National Advice Service, Rethink, 28 Castle Street, Kingston-upon-Thames, Surrey KT1 1SS 13

northern ireland Northern Ireland’s anti-stigma conference

ust two weeks under my belt as the Public Affairs Manager for Northern Ireland and I attended the anti-stigma conference in the studio

venue with tiered seating above the stage area giving all delegates a good view. The set itself was well dressed with ceiling mounted and

interaction and interest shown by the delegates.

Speakers and feedback A delegate from the Mental Health Commission volunteered his opinion that “there wasn’t one bad speaker in the whole conference.” I readily agreed; from human rights to user and practitioner perspectives there was something for everyone. Professor Graham Thornicroft also gave Rethink a great plug in his presentation with the statistical evaluation of earlier anti-stigma pilots.

• Monica McWilliams – Chief Commissioner Northern Ireland Human Rights Commission, Cliff Prior – Chief Executive Rethink, Ruth Sutherland – Northern Ireland Director Rethink and Eileen Largan – Member.

of Belfast’s landmark Waterfront Hall. It was an opportunity to influence some key stakeholders and to inform partner organisations, members, carers and users of our intention to mount a major anti-stigma campaign in 2006. Getting the branding right and dressing the set were critical. The studio was an ideal

suspended 6 metre Rethink banners, a double screen for visual presentations and a Rethink branded podium. Sound, light and screening were well controlled by the conference technicians. We had two areas for exhibition, one on the first floor alongside the tea and coffee facilities and a second inside the studio for our art exhibition. All stall holders declared themselves well pleased with the level of • Pictured left: Wallace Huey – Author and Life-Coach “A Life Discovered” and the Open Arts Choir

There were 80 returned evaluation sheets representing approximately 33% of attendees. The overall satisfaction rate was 97.5% with a “very satisfied” rate of 67.5%. A number of delegates wrote additional thanks and congratulations in the comments section. The Open Arts Choir, made up of people with and without a disability, was singled out for special praise. It also reinforced the recovery message focusing on ability, not disability.

Media coverage Media coverage of the event was patchy. On the day we received coverage of our press release from the Irish News, Belfast Telegraph and CityBeat radio and Daily Ireland ran a half page feature interview with our Director, Ruth Sutherland. Our Communications Team Leader, Colin McAlister, followed up the event by sending photographs and a postconference release to local weeklies. Overall, the Public Affairs team was well satisfied with the conference and believe it sets a benchmark for future events and campaigns. Fergus Cooper Public Affairs Manager Rethink Northern Ireland winter 2005/06

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northern ireland Mental Health service provision The Northern Ireland context

elegates to the conference came from across Ireland but there were some who came from “across the water”, including a group of Mental Health nursing students from Staffordshire University. As one of them commented afterwards, the conference provided a “good insight” into the stigma faced by many people. The conference also provided a useful insight into the provision of mental health services in Northern Ireland and the challenges to be encountered there. The expenditure on Adult Mental Health care in 2002/ 03 was 6.1% of total H&SS expenditure. It is calculated that expenditure on mental health in Northern Ireland was 30% less than in England over the same period. Over half (57%) of mental health expenditure (2002/03) was on hospital services, again a greater proportion than in England. The Needs and Effectiveness Report estimated that Northern Ireland’s need for mental health services was around 25% higher than in England. English expenditure on mental health in 2002-03 was 11.8% of public spending on health and social services compared to 8.4% in NI for the same period.

• Prof. Phil Barker and Prof. Graham Thornicroft your voice

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• Ruth Scott – Artist, with Cliff Prior – Chief Executive, Rethink

The recent Northern Ireland Review of Public Administration aimed to address some of these issues. The Review has resulted in the Health Minister Shaun Woodward announcing, 22/11/05, the biggest ever reform to health and social services in Northern Ireland. In pledging to put patients first, Shaun Woodward unveiled radical plans to strip bureaucracy and waste in the health services and redirect millions of pounds into front line services – the “Cinderella of health services” (mental health) was specifically mentioned as a target for increased funding. The plans include: • A Strategic Health and Social Services Authority to replace four Boards. • Five Trusts to replace the existing eighteen. • Seven local commissioning bodies.

The plans have a direct impact on how Rethink operates in Northern Ireland and key challenges include: • Evidencing the need for sustaining existing service delivery in each of the five Trust areas. • Establishing new relationships/ partnerships with the Authority, Trusts and commissioning bodies. • Developing new and innovatory services which will attract the redirected funding. • Sustaining and developing the organisation when all around us is in a state of chaos. The challenges are many but as in the past Rethink in Northern Ireland will work with all concerned to support and help those affected by severe mental illness to recover a better quality of life. Anne Doherty Northern Ireland Area Manager 15

volunteering Rethink’s swimming champion

Rethink Service Manager has triumphed at the World Cerebral Palsy Games, bringing home four gold medals and a world record time. Swimmer Neil Smith, Area Services Manager for Rethink East Midlands, scooped the accolades after winning the 200m Individual Medley in record breaking time as well as claiming victory in the 50m, 100m and 200m freestyle. The event, which attracts athletes from over 36 different countries, was held during July in Connecticut. Neil, who is part of the City of Birmingham Swimming Club, is

based in Leicester and has been with Rethink for fourteen years. His intense pre-event training routine comprised swimming up to forty kilometres in the pool and took in four gym sessions a week. Speaking about his success Neil commented, “I am extremely proud of my achievements at the championships which are the result of months of hard work and preparation. To reach the top of your field in a sport that you love is an amazing feeling and I would particularly like to thank my colleagues and senior management at Rethink for their support and for giving me the special leave I needed to compete in the championships.” After experiencing Cerebral Palsy since birth, Neil originally used swimming as a form of therapy. However, from an early age, his talent for the sport shone through and, as a Great Britain squad member, he is now a veteran of three World Championships and the proud owner of numerous medals and awards. In his spare time, Neil dedicates his energies to helping the next generation of swimming stars realise their potential and coaches children with varying degrees of disabilities. He stated, “I feel it’s important to give something back to your sport.”

Inspirational volunteer

ethink Media Volunteer Stuart Baker-Brown has scooped two prestigious industry awards in a week for his dedication to raising awareness of severe mental illness. Stuart, who was diagnosed with paranoid schizophrenia in 1996, joined Rethink as a media volunteer in 2002 to fight the stigma of mental illness by speaking out in the media about his experiences. Stuart trekked to Everest Base Camp in 2003 to raise awareness of schizophrenia and has given numerous media interviews to

campaign against the stigma and discrimination faced by people with mental illness. He was awarded a “Year of the Volunteer Inspiration Award” by Community Services Volunteers (CSV) and was Highly Commended in the Volunteer of the Year category at the Third Sector Excellence Awards. Stuart said: “I feel extremely chuffed with both awards. Just being nominated by Rethink in itself is a real confidence boost for me. It can often feel very difficult to talk about my illness and these awards help me to feel others hold some value in

what I am trying to achieve for the understanding of my illness and for the future understanding of all those experiencing mental health problems. Having the support of Rethink’s media team is vital for me and without that support my voice would be silent and unheard.” BBC newsreader Kate Silverton presented Stuart with his Highly Commended Certificate at the Third Sector Excellence Awards in London on 6th October. The category honoured volunteers who have shown greatest commitment and achievement in a voluntary role over the past year. Stuart collected his CSV award at Dorset County Hall on winter 2005/06

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volunteering South West Regional Members Day

ver 116 Rethink members attended the South West members day at Gloucestershire Cricket Club ground in Bristol. Members travelled from all over the South West and there were representatives from every county in the region. The day was launched by Eddie Godfrey, Chair of the South West Regional Reference Group and the main speaker was Frank Burbach, Clinical Psychologist for Somerset Partnership NHS and Social Care Trust. Frank gave a very enjoyable and informative talk on Cognitive Behaviour Therapy and he also spoke about the Family work being developed in Somerset. This was followed by four workshops on the subjects of Direct Payments, Food Mood and Mental Health, Self Harm and Dialectical Behaviour Therapy, and just to get us all off our seats Mental Health and Physical Exercise. The day was enhanced for many by the fact that four out of the five workshop presenters all had personal experience of mental health problems and the subjects they were talking about had helped them in their recovery.

â&#x20AC;˘ Steve Uhlyk standing beside a sample of the new promotional materials being used in the South West. As you can see Steve took part in the original photoshoot

Feedback from members showed that the day was very successful with positive comments about the workshop presenters, the lovely lunch and the venue overall. Members also commented about the invaluable opportunities to get together with other members of Rethink.

10th October from the Lord Lieutenant of Dorset, in recognition of overcoming personal obstacles to inspire others and become a community role model through volunteering. He was also shortlisted as a CSV Regional Champion and invited to attend a Year of the Volunteer celebration ceremony at the Theatre Royal, London, on 22nd January 2006. Stuart plans to continue his work to highlight the stigma and continual challenges facing people with mental health problems. â&#x20AC;˘ Stuart pictured right, exhibiting photographs of his previous trek your voice

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personal story

Jeni’s brother developed psychosis when she was just 12. His illness had an enormous impact on her life. In this very moving piece Jeni gives an account of how her brothers illness affected her life.

From a sister’s point of view “You’d better stop crying, or I’ll hit ya!” – these are the words my socalled brother yelled at me when his illness went totally out of control two years ago. After one night in October 2003 I have despised my schizophrenic brother and wished he was dead…

am the youngest of four children. My oldest brother is called Andrew and he is 24 years old. He has recently moved to London where he works for an insurance magazine as a journalist. I also have an older sister called Suzie who is 18 years old; she is a junior pharmacist at Winchester Hospital. I get along great with these two; however I don’t even talk to my other brother, Richard, 20. Ricky has never agreed with going to school in England. Since moving to England from Holland Ricky has given every teacher grief at Primary school and Secondary school. He had a best friend from year 7 called Jonathon and the two were inseparable! My family loved having Jonathon around our house, but did not know what the best friends got up to when their backs were turned. My family have found lots of possible reasons to why Richard was so unhappy at school but never found a definite answer. Thinking about it now I think maybe having to leave his best friend called Uzair in Holland may have been the reason but nobody will ever know. My brother has always been a violent and aggressive person. I remember one time my two brothers were arguing and it got violent. In the end Richard put a knife through Andrew’s door. The first real sign of something not right with my brother was when he was in year 9 and my mum and dad found equipment for making bongs in his room. However, they had had 18

their suspicions before. His schoolwork went downhill from then onwards, for example, he never did a piece of coursework for his GCSE exams. However, a few days ago my dad was speaking to Ricky’s old English teacher and he told my dad that he and another teacher had secretly helped Ricky so he had something to hand in!! After many letters and interviews complaining about lateness, behaviour problems and homework issues, the school gave up on my brother. When the results for his GCSEs came in the post he knew he had failed miserably. During the summer that followed my brother was extremely depressed. He was so miserable as he had lost all of his friends and with no prospects of going to college. He sat in the kitchen, with his head in his lap for the whole summer. As I think about it now I feel so guilty for hating him and I genuinely feel sorry for him about being depressed. Christmas 2003 was the most awful and depressing Christmas my family has ever had. One day I came home from school in a really happy mood to find my mum on the phone to Richard’s social worker. When she got off of the phone she was in a terrible mood. She informed me that Ricky had gone off the rails. She sent me and my sister to the shop to refund some tickets. When we got home my mum was on the phone again, this time to the doctor’s surgery. Beforehand my brother had yelled a nasty comment to my sister when we walked past his bedroom window which made me worried he would be violent towards Suzie.

“

After one night in October 2003 I have despised my schizophrenic brother and wished he was dead…

”

He came bounding down the stairs and demanded to know who my mum was on the phone to. When she told him he went crazy and snatched the phone off her and said something aggressive at my mum. I ran away as I was really scared of my brother because I was only 12 at the time. My dad came home and I returned to see my mum with a huge bruise on her face, grasping at it in pain. Ricky had punched her in the jaw and threatened to kill her. Before I could say anything there was a loud knock at the door. My brother answered. Stood there were two huge policemen and two police vans outside. Richard slammed the door on them and ran upstairs. After some frightening screams, loud thumps, swearing and door slamming I saw two policemen escorting Richard down the stairs. We had to close the curtains because they said it would be distressing if they had to be brutal with Richard if he would not cooperate. Police women told us that Richard had been sectioned under the Mental Health Act and was taken away to hospital. As soon as he had gone my dad broke down into hysterical tears which was really winter 2005/06

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Service users are crucial to the work of Rethink. In 1986 a group of service users got together to form their own forum. Voices Functions officer, RACHEL BRETT, explains the work of the Voices Forum.

alarming as I have never seen him cry. This made me cry like a little baby. It was so distressing seeing my brother being handcuffed. I was also thinking about my family including my elderly grandparents and how everyone in the village was going to react to this drama. Life has been really hard since then. Richard had to stay in the Department of Psychiatry during Christmas. That Christmas has made dislike Christmases since because nobody was in the mood for it. Everyone just wanted it to be over as nobody was in the festive spirit. I even broke down in tears because I was only young and wanted everyone to be cheerful because it was Christmas. The day he came out of hospital was the worst day of my life. I was so angry at him for hurting my family and putting us under so much stress and anger. In year 9 I wrote a really angry essay about him and his annoying habits and violent behaviour. In fact, I thought this piece of writing would be the same but I now realise that it wasn’t my brother that was putting us through so much pain. It was his illness. He had schizophrenia and had no control over his temper and feelings. I feel so guilty for the past few years as I’ve feared going home when he’s there in case he has another “episode”. Also I have not been nice to my parents about him which I now know is not acceptable as it is not their fault and must be hard for them, as they have lost their son. And I have lost my brother. If you would like to support Rethink’s sibling fundraising campaign phone 0845 456 0455. your voice

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profile

National Voices Forum

ational Voices Forum was founded in 1986 by (ex) service users and survivors. Today the organisation has over 600 members. One of our functions is providing a number of local support groups run entirely by users of mental health services. The network offers mutual support, and develops awareness of mental illness, particularly schizophrenia, from the viewpoint of those who have experienced it.

We produce a quarterly magazine called Perceptions, which gives members the chance to write about their experiences and views or to contribute poems, short stories, artwork and cartoons. Also inside is a list of our local groups, contacts and Area Liaison Officers who work from home, providing support and information. The magazine is published shortly before each quarterly National Business Meeting, open to all (ex) service user members. We organise the Martha Robinson Poetry Competition with a 1st prize of £100, and this year the shortlist will be published in Perceptions for members to decide the winner by postal votes. Also this year Voices Forum held its fifth conference, “Discovering Autonomy”, in London. Speaking from both a service user and professional perspective were Jan Wallcraft and Rachel Perkins, while Chris Barchard (Voices Forum‘s Chair) gave a talk from the service user’s point of view. The event also included workshops with live lunchtime entertainment from some of the delegates, and despite the attempted terrorist attacks that happened in London that day, the • Chris Barchard from the conference was a great success. National Voices Forum We provide a considerable proportion of user representatives on Rethink national committees including the Board of Trustees. We are represented on other national and local committees as well, including the Mental Health Alliance. In addition we have a website: www.voicesforum.org.uk that contains material from past editions of Perceptions. The site has been developed entirely by one of our members and appeared in an article on the “best top ten medical advice websites” published by the Guardian in December 2004. Future projects for Voices Forum include making and producing our own video about services users’ lives, by filming our members. All volunteer members and committee work are supported by a part time worker providing an office base and a point of contact for existing and prospective members. Membership is free for (ex) service users and for an annual subscription of £8 to paid workers and carers. Although we are a part of Rethink, we are constitutionally empowered to formulate our views, policies and activities independently. If you wish to become a member you can join on-line at our website, or contact Rachel Brett for a membership form at: 28 Castle Street, Kingston, Surrey KT1 1SS.

feature Rethink recruitment

ethink is a campaigning membership charity involving people with severe mental illness and carers, with a network of mutual support groups around the country. Rethink is also the largest voluntary sector service provider in mental health, helping 7,500 people each day. Probably you already know all this, but what many people do not know is that we are also a large employer, with around 1,300 employees. Ours is a diverse and expanding organisation. Quite simply, we offer extraordinary careers. It’s not a clock in, clock out environment because our work demands an unusual level of commitment and provides elevated levels of satisfaction. People who work for us and with us tell us that we are great; not only because we are 100% committed to making a positive difference to the lives of all people affected by severe mental illness, but also because we are forward looking and innovative. You’ll find that people throughout the organisation believe passionately in what they do. Indeed, the first things we look for in people who join us is that they have an understanding of mental health issues, a passion for our values and a real desire to make a difference. In return, we treat our people well. As a recognised Investor in People, we take professional development seriously, so we provide opportunities for Rethink employees to move on in their careers – whether that’s through new responsibilities or utilising our comprehensive in-house training programme, or providing opportunities for future development. We also encourage staff involvement in decision-making through our staff consultative council. We also understand that a rewarding and fulfilling career is just as important for people working in the charity sector as in business. So we offer competitive rates of pay, and benefits that include an award winning CARE pension scheme, generous annual leave entitlement of 25 days (rising to 30) plus 8 public holidays per year and a Group life assurance scheme. For our employees that have to travel a lot due to the nature of their roles, there is also a funded vehicle scheme. Rethink also has a strong

commitment to supporting Black and Minority Ethnic (BME) staff through a variety of ways, but particularly through a national network whose objectives include: • Encouraging BME staff to achieve their full potential. • Increasing the proportion of BME staff at all levels within the organisation. • Creating personal development opportunities through training workshops and events, and a BME mentoring programme. • Providing a network for BME staff to focus on their careers within Rethink and set individual goals that will enhance their career pathways and opportunities for progression within the organisation. The clinical services that we offer help us provide a safe, high quality model of service and promote independence and recovery. We employ a range of staff including support staff and qualified nurses and offer full and part time positions. We can find that competing with the NHS in terms of attracting good quality staff can be difficult. Despite this, a lot of people make the transition, although moving across from the NHS is sometimes seen as a big step, but according to Brent Peplow, Service Manager of Fairview House in Wiltshire, it is one which people rarely regret. Indeed, Brent himself moved from the NHS mainly because he was attracted by the opportunity to explore a different style of care. “I’ve never looked back, and that’s a common feeling for people in my position, Rethink is a very good employer with benefits and rates of pay which compare well to the NHS. As an organisation, they take your career satisfaction very seriously and that’s reflected in the supportive culture just as much as in the excellent prospects for training and promotion. The teams tend to be smaller than in wards, and that means we work in a very mutually supportive way. Obviously the NHS is big and diverse organisation, but I think it’s fair to say that in general, we have a more personable and friendly culture, it’s also true that there is less red tape, which means you can gain responsibility much more quickly with Rethink.” “And, especially for RMNs, there are always opportunities to broaden your work experience and skills. There’s a real focus on improving professional and managerial skills. Plus, because you are the main point of contact for each resident, you can enjoy an unrivalled level of decision making when planning service users’ individual care.” If you would like to find out more about working for Rethink, please visit www.rethinkjobs.org or email us at recruitment@rethink.org, or contact us on 0121 522 7120. winter 2005/06

your voice

news Pandemic flu

ou will no doubt have seen media coverage relating to pandemic flu and bird flu. We thought it might be timely to provide some simple guidance. Pandemic flu occurs every so often and an outbreak is considered overdue or imminent. If you are old enough you may remember the last one in 1968, Hong Kong Flu. These pandemics are worse than the normal winter flu and are likely to affect at least 25% of the population. With regard to bird flu this does not normally affects humans. However there is concern that this virus may mutate into a form that could be passed between humans, resulting in a pandemic. If you are in the group of people able to have the normal winter flu vaccine you should do so, but there is as yet no vaccine against pandemic flu and it is

unlikely one will be available for some time after the start of a pandemic. In the event of a pandemic flu outbreak you may be offered antivirals, you need to receive these if appropriate within 48 hours of symptoms appearing. The Department of Health advises the use of these drugs for a pandemic. However please ensure the person administering the antivirals is aware of any medication you are taking. The same applies to vaccines when these become available. The symptoms of pandemic flu are similar to ordinary flu but more severe. You can help protect yourself and others by: • Maintain good hygiene; regular hand washing protects against picking the virus up from surfaces and passing it on. • Clean hard surfaces e.g. kitchen worktops and door handles

Wigan Publicity Drive

our members of Rethink staff from Hyndelle and Leigh Drop-in Centres spent the afternoon in Wigan shopping centre on Thursday 13th October.

They chatted to the general public, handing out balloons, along with Rethink publicity. material; promoting the relevance and importance of Rethink Week.

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frequently, using a normal cleaning product. Cover your mouth and nose when coughing or sneezing. Dispose of tissues promptly and carefully, binning and bagging them. Avoid large crowds of people whenever possible. Avoid non-essential travel.

If you believe you are infected • Stay at home and rest. • Take medicines such as aspirin, ibuprofen or paracetamol (unless you are allergic). • Drink plenty of fluids. • If concerned about your condition or someone else’s contact your GP or NHS Direct 0845 4647. The government has many channels to update the public, television/radio and the papers etc. Leaflets will also be produced. David Dodd West Midlands Regional Manager

Ken Livingston supports carers

ith support from the Mayor of London, Ken Livingston, the Greater London Authority is planning to set up a Pan London Carers Forum in Spring 2006. Your Voice is pleased to say that Rethink’s Terry Hammond has been selected to work with the Greater London Authority to help launch the forum. Terry told Your Voice “This is a fantastic opportunity to get the needs of all carers living in London on the map. One of the key aims of the forum is to give carers a stronger voice and to highlight the needs of London carers”. If you would like to find out more about the forum contact Terry Hammond on Terry.Hammond@london.gov.uk or 020 7983 4102.

your voice

winter 2005/06

news Not a dry eye in the house

y youngest son Christian developed schizophrenia at the tender age of 16 almost 16 years ago now, To say that life has been tough would of course be an understatement, miraculously he now works part time in the information department at Thurrock Hospital close to where we live, he manages his own flat with very little support and is also one of the few Mental Health Service Users in receipt of Direct Payments, which has provided him with a companion for 12 hours per week and two paid holidays a year. On Friday 21st October he received the Mayor’s Award in our home town for the way he has coped over the long duration of his illness. We had discussed what he wanted to say: he wanted to say that the award was wasn’t just for him but for all of the people out there who suffered from a mental illness and then he would read a poem entitled Moving Mountains. He had read it before to an audience of 150 mental health carers but I would estimate that there was about three times that many

people in this audience. He went up onto the stage to receive his award and then asked if he could say something; loudly and clearly he said all that he wanted to say and left the stage amidst a standing ovation and thundering applause. His dad and I both agree that no matter what he had done in his life e.g. climbed a mountain or received a doctorate we could not have been as proud as we were at that moment, the very fact that he has been able to face another day at times has amazed us too. Service Users deserve the utmost respect for their suffering, sadly due to media attitudes it’s all too often only the families who are aware of this. We need to teach people about mental illness so that future generations grow up with the right attitudes and only then will those who are unlucky enough to fall victim to this tragic life event receive their just desserts, but for now we will remember that night when I can honestly say there wasn’t a dry eye in the house. Georgie Wakefield

From Goldfish Bowl To Ocean

ome readers may recall an advert from the “Telling Stories” project, asking for volunteers to talk or write about their experiences of mental illness and recovery. Three years later the result is being published in a collection, From Goldfish Bowl To Ocean by Chipmunka Publishing. It has been a rewarding and frustrating time. The stories and interviews were often fascinating and compelling, revealing people’s struggles with mental illness, the prejudice they frequently face and their search for recovery on their own terms. The frustrating part was dealing with publishers and agents; we received numerous letters from them, telling us that the “general public” are not interested in buying books on mental illness; there was no “market” for the kind of book we were offering. One publishing house said the book would only ever sell if there was a high profile celebrity involved! Coming in on a Monday morning to a pile of rejection letters, it was sometimes hard not to think that they might be right. Then we stumbled on Chipmunka Publishing. The founder, Jason Pegler, is himself diagnosed with bipolar disorder and has set up his own publishing company dedicated to the work of people with mental 22

health problems and getting their voices heard. And – other publishing companies please take note – their books are read. He recently won a New Statesman Upstart Award for Young Social Entrepreneur of the year, beating media man of the moment Jamie Oliver, to the post. After much debating, the final version of the book is a collection of fourteen interviews with people who have been diagnosed with a severe and enduring mental illness. We hope they show that each person’s experience is unique, that their experiences are meaningful and that everybody has a right to describe their own experiences and their own lives. Just as they have a right to define their own “recovery”, to find new ways to live and manage their condition rather than fit in with society’s expectations. I’m not too proud to end with a plea of “Please buy the book”. Buy it, value and share these people’s experiences and prove those publishers wrong. Thank you to everybody who took part in the project; from those I interviewed to those who sent in stories and letters. It was great to meet you. From Goldfish Bowl To Ocean is available from www.chipmunkapublishing.com or ring 0845 456 0455. Zoe McIntosh winter 2005/06

your voice

news World Mental Health Day and Rethink Week in Croydon

he Mayor of Croydon, Maggie Mansell, Chief Executive of SLaM, Stuart Bell, and two senior Counsellors were among the 75 people who visited the Croydon World Mental Health Day on 10th October at Croydon Town Hall. Rethink were represented by Dom Dowell, Area Service Manager and Roger Oliver, Carers Support Co-ordinator and they were assisted by Naome Lee, a Croydon Carer.

the Project Manager’s post), CIAMHS Management (Psychiatrists, CMHT Manager, Team Leaders), PCT (Commissioner, Pharmacist, MH Promotion, and Directorate), Hear Us user group and Rethink Carers Support Co-ordinator. The partnership was conceived in 2003.

The event was hosted by PHASE Project (Physical Health and Severe Enduring mental illness) and Rethink severe mental illness Croydon Carers Support Project. The theme of the day was the promotion of positive mental health to everyone. Service users, carers, professionals from the services and members of the public were invited to drop into the event, which promoted physical health and mental well being. Free confidential advice, information and heath checks by trained staff including: • Weight and Blood pressure by nurses • Healthy eating by a Dietician from Mayday • Lung function test and Smoking cessation advice by the PCT • Exercise advice • Diabetes information by the PCT • Expert Patient Course promotion by the PCT • Stress and Mental Health Promotion by the PCT SlaM was represented by the Therapeutic Intervention Service from Tamworth Road and the Borough Pharmacist (Railton Scott). The Essence of Care Physical Health Standards were demonstrated by the Recovery and Rehabilitation unit at Westways RC. The Primary Care sector was represented by Dr Henk Parmentier (GP), nurses from the NHS Walk-in and Primary Care Workers from Brigstock and South Norwood GP Practices. The voluntary sector was represented by the Patchmore Centre (one of the Healthy Living Centres) and Rethink severe mental illness. The PHASE project, a nominee for the NHS Health and Social Care Awards (London Region), was set up at Purley RC to link with GP Practices in the South Croydon area to co-ordinate physical health checks of person suffering from severe mental illness. PHASE is a partnership between Drug Companies (who part-funded your voice

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It was felt that the concept of PHASE must spread to the rest of Croydon, and that the day was a success as information and practical advice was given to a wide range of the visitors and important personal links were made between the professionals from both primary and secondary care services. On Wednesday 12th October, Roger Oliver was invited to Gresham 1 Ward of Bethlem Royal Hospital to talk to patients and carers about the Croydon Carers Support Project and his work as part of the World Mental Health Day.

Calling all runners!!

ethink have a number of Golden Bond places for the Flora London Marathon 2006, taking place on 23rd Aprill 2006. If you are interested in taking up the challenge and running for Rethink, please contact Jen Giles on 0208 547 9202 or jen.giles@rethink.org.

project profile RISE community service exhibition

ISE Community Service provides venues in three localities – Southend, Rochford and Castle Point – for people referred by Community Mental Health Teams. We aim to reduce social isolation, and provide social, recreational and educational opportunities. RISE Community Service has been working in partnership with a local school, Cornelius Vermuydun Arts College in Canvey Island, and local professional artists to explore various art media. Following an initial contact in 2003 and follow-up meetings between Andrew Barry, the school’s Arts Director, and Trish McMeekin, Service Manager, the art workshops began in January 2005. The workshops were open to anyone using or working for our service. To date we have worked with three professional artists continuing from a very successful previous project centred on ‘Recovery’. The group studied life drawing – thanks to Sue (our administrator) who volunteered to model – this helped the group focus on looking at a figure, and developing perspective.

participants to this style of modelling. Some participants used these workshops to develop their own ideas. Participants of the workshops were invited to submit their art work for exhibition. The school has now had a gallery built on the school site. The gallery opened in September 2005 and we set up our exhibition on 7th October, timed for World Mental Health Day. The exhibition linked our service and Rethink’s name with a professional-standard exhibition which may help deflect the stereotype images

The second series of workshops were facilitated by Jacci Todd, and delivered at our Rumsey House venue in Rochford. To prepare for these workshops the participants had to either bring a photograph or have one taken. Using a computer programme, the image was scanned and then manipulated to provide a strong linear image which was transferred by tracing onto cotton. The third phase of this project was to create the images in relief in clay. Richard Baxter has facilitated the ceramic workshops. The group participants diversified the theme. The first ceramic workshop centred on developing familiarity with the medium, and basic techniques. Richard, famous locally for his unique figures, introduced the 24

often portrayed by the media. The work stands proud, depicting positive images of participants – the talent will reach the viewers’ eyes first. The workshops have proved popular and we have been granted a further six workshop days by Andrew Barry. Comment from Andrew Barry – “this is our most successful community project – it just took off!”. Participants have been able to concentrate their focus on creating art work which will reinforce their sense of personal achievement. Our service visited the Gallery on Wednesday 12th October 2005 – travelling into the community. Contact RISE at Rethink Community Service tel: 01702 330267. Trish McMeekin Service Manager, RISE winter 2005/06

your voice

personal story My first admission

fter graduating from University College London, I received a letter from the Ministry of Defence saying that I was being offered an appointment in the grade of Executive Officer subject to satisfactory investigations into health and “other matters”. I was delighted by the news, and smiled to myself at what I assumed was the euphemism for security vetting. On 13th November 1978, I reported to a Higher Executive Officer in a building in Holborn, London, and started work. For four or five months all went very well. After that, though, I suspected I was under surveillance. At first it was a matter of thinking I was being followed and that

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My will would no longer be my own and I would be made to do dreadful things. There was only one thing to do – kill myself.

”

my telephone had been bugged. Given the nature of my job perhaps this was not excessively paranoid. But then I imagined my bedsit had been entered and searched, and they had installed microphones and even placed miniature cameras there. Without knowing it, I was going insane. The question I kept on asking myself was: Why? Did MoD Security have doubts about my loyalty? With such intensive surveillance surely they would have discovered I was lily-white. Perhaps I was being assessed for promotion to an especially sensitive job. Despite believing I no longer had any privacy at all, I was excited. I told no one, but I was inwardly thrilled. What was going on in the real world? What was I reading in my newspaper? The previously unheard-of Dangerous Sports Club took up bungee jumping – also previously unheard of. On April Fools’ Day in 1979, a few eccentric young men, donning top hats and tails, jumped from the Clifton Suspension Bridge, with long elastic bands tied around their ankles at one end and to the bridge at the other end. It made front-page newspaper and TV news. your voice

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But for the moment, this did not affect me. Within a few days, I was spending the Easter holidays with my parents in Lincolnshire. My mother brought up the subject of the bungee jumping and told me that not all the members of the group had managed the jump; one had still to do it. For some reason I jumped to a conclusion. My mother was telling me this because I had to jump from the Clifton Suspension Bridge. My mother had been co-opted by the MoD, and this was some sort of test – which she knew all about. I started to be swamped by a succession of bizarre ideas. Secret policemen and soldiers were stationed in our neighbours’ houses. My parents’ house was extensively bugged (and had been for years). The television was receiving signals not from the aerial but from a cable attached to sophisticated video equipment controlled by the MoD (or was it MI5, or MI6, or even the dreaded CIA?). The programmes all had special messages for me. I lay awake in bed that night, my mind working overtime. How foolish I had been to think there was something good in store for me! Whatever my eventual fate, these people wanted to drive me mad in order to take over my mind. Yes, I had read about the CIA mind control experiments. My will would no longer be my own and I would be made to do dreadful things. There was only one thing to do – kill myself. If I made a mad dash for the car in the drive and shot off in it at speed, I should probably be able to escape the exclusion zone around my parents’ house, and drive into a hard object somewhere. I put my plan into action and it almost worked. I found myself doing 70mph along a main road. On the right I spotted a house and aimed at it. The car hit the kerb in front of the house and rolled over onto its roof and slid along the road a long way. When it stopped I realised that I had to get out of the car as quickly as possible to prevent being burnt to death if the car caught fire. I found my parents awake when I arrived back at the house. They called their GP and he arranged for me to be admitted to a psychiatric ward in a nearby general hospital. My mother and father drove me there. I held my mother’s hand in the back of the car; she had betrayed me but I still loved her. On arrival we were received by a most strange looking nurse who spoke with a peculiar accent. The doctor, when he arrived, was odd, too. And then there was that 25

personal story Army Land Rover parked outside. The penny dropped – they had taken over the hospital. They knew I was coming. They knew I would attempt suicide and they knew I would survive. I had been programmed all along.

Rethink Week

After my parents left, I was shown to my bed and the curtains were drawn around it. Alone with my thoughts I had time to take stock of things. What a fool I had been! I had always assumed that the people in power were benevolent. Of course not! And now they could, and would, program a person even to take his own life. Perhaps Lee Harvey Oswald had been programmed to kill President Kennedy. Perhaps, God forbid, I would be the assassin of our Prime Minister.

Quiz Night in Ramsbottom

There would be no high salary for me as I had earlier dreamed of. Why would they pay me when I was their creature? But perhaps there would be sex. I started feeling horny and took off my clothes and set out to explore the ward. A female nurse came up to me and I supposed she was assigned to have sex with me. I raised the skirt of her uniform a couple of inches, but she cried out for help. Four or five male nurses rushed towards us and forced me down onto the floor. Within minutes I was being injected in the bum. I kept resisting being restrained but I became weaker and weaker.

Accrington-based Mayes Business Partnership was the main sponsor and raffle prizes were donated by local traders and organisations including Peel Lions and the Northern Pet Centre.

I awoke in a small room. There was a bright light in the ceiling and my bed was inclined so that my head was lower than my body. Two men dressed in grey suits were checking on me. I awoke again and got out of bed. The men came in and I fell through a hole in the floor. I awoke again and I could see the first glimmers of dawn through the cracks around the shutters of the window. Birds were singing. I knew this was not the place to which my parents had brought me. An hour or so passed and I could see movement through the pane of glass in my door. People were queuing for a cup of tea from an urn. I ventured out and joined the queue, and took my cup to an armchair. The place reeked of cigarette smoke and floor polish.

ore than £600 was raised for Rethink at a quiz night at the Grant Arms Hotel in Ramsbottom. Bury North MP David Chaytor opened the fundraiser which featured 16 teams pitting their wits in the ten round Rethink Challenge Quiz. The winning team, The Dingleberries from Heywood, received a prize hamper.

Organisers, Regional Reference Group Members John and Sylvia Taylor, presented Matthew Williamson from Rethink with a cheque for £602 at the end of the quiz, which marked the start of Rethink Week and World Mental Health Day.

Quiz Night in Stockport

n Stockport 32 people participated in a Rethink quiz; the evening was run by a Rethink member of staff and was a great success.

National Bipolar Twin Study

One of the grey-suited guards sat next to me and seemed friendly. He turned to me and quietly said that people had been worrying about me.

•

“I suppose if I don’t behave myself here, they’ll send me to the funny farm,” I said.

• •

“This is the funny farm,” he replied. Adrian Cox

•

re you a twin who has bipolar disorder (manic depression)? We are looking for same sex twin pairs where either one or both twins have bipolar Our research is aimed at improving our understanding and ability to treat bipolar All expenses are paid plus a small fee We can provide you with a picture of your brain

For further details please contact Dr Kalidindi on 020 7848 0035, email twinstudy@iop.kcl.ac.uk or visit: www.iop.kcl.ac.uk/twinstudy

winter 2005/06

your voice

RUTH SUTHERLAND, Director of Northern Ireland – Rethink

feature

Prejudice and discrimination – a human rights perspective The Chief Commissioner for Human Rights in Northern Ireland, Monica McWilliams, addressed the Northern Ireland conference on Stigma. Monica framed her presentation by marrying campaigning with the legislative and human rights agenda. Here the Northern Ireland Director, Ruth Sutherland, reports back on the Chief Commissioner’s address.

he conference sought to stimulate ideas and action on how to create changes in attitudes towards mental illness. With its long and protracted history of conflict and sectarianism people in Northern Ireland are acutely aware of how difficult it is to change long held attitudes. Monica McWilliams stated that in her experience change can come through legislation and/or through campaigning but urged the conference not to forget the influence of the help-providers in creating change. She said, “When the experiential knowledge of the users and carers is added to the knowledge of the professionals and academics then we are truly beginning to build a radical and more inclusive movement on mental health issues.” How can the Human Rights Commission help to challenge prejudice about mental illness? The Commission provides independent specialist advice on human rights matters. It also has the power to provide assistance to individuals in relation to proceedings involving law and practice concerning the protection of human rights. The Northern Ireland Act specifies that the Commission may “grant assistance if the case raises a question of principle; if it would be unreasonable to expect the person to deal with the case without assistance, for example because of its complexity; or if there are other special circumstances.” The work of the Commission is complementary to the work of the Equality Commission and the Children’s Commissioner. Monica stated that in Northern Ireland these bodies have much to offer the mental health sector and should be utilised to the full degree. Section 75 of the Northern Ireland Act is monitored by the Equality Commission and is a powerful tool in the discrimination battle. The Children’s Commissioner is committed to improving mental health services for young people. The distinct role of the Northern Ireland Human Rights Commission is to focus on local and international your voice

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human rights standards. It has the powers to visit places of detention such as mental health institutions, hospitals, nursing homes, children’s homes etc. It can take witness statements and make reports on these investigations. This will be another tool to improve the lives of those suffering from mental illness. The Commission will use its powers both strategically and selectively to improve services for those in various types of care. In 2002 the Commission published ‘Connecting Mental Health and Human Rights’, a review of policy and practice in Northern Ireland. The report noted the Commission’s concerns with inadequacies in services for children and young people with mental health problems; the need for procedures for detention which are swift, independent and impartial; the resourcing of the tribunal system and provision of accessible treatment for people diagnosed as having a personality disorder. It is envisaged that the report will provide an important contribution to the work of the Bamford Review looking at the law affecting people with mental health needs or a learning disability in Northern Ireland. Rethink in NI has participated in this review and expect it to endorse their anti-discrimination campaign which the conference announced. Political conflict Monica highlighted the impact of political conflict and its legacy within Northern Ireland. Over 3,500 people were killed; 40,000 injured; and over 16,000 people were imprisoned. There were few families unaffected by the conflict. The Commission reported on the need for appropriate services for these victims of human rights violations. Monica highlighted ‘The Hurt Inside Report’ on conditions in the women’s prisons as a recent Commission investigation with clear mental health implications. This report described “the mental health provision as inadequate, with prison officers receiving inadequate training in appropriate care. The recommended provision of health care plans was routinely ignored including the provision for women considered at risk of self harm and suicide.” The legal basis for the Commission’s work in the area of mental health Monica explained that the Human Rights Act 1998 27

feature underpins all of the work of the Commission. Before 2000 we could only claim these rights at the European Court level, whereas now they can be claimed in our local courts. The Human Rights Act is a special piece of legislation because unlike any other piece of legislation all other laws must be compatible with the ECHR. Therefore before new legislation is introduced in Parliament the Minister must make a statement to this effect. Compatibility with the ECHR is now the basis of much debate on the various stages of the legislative process. If any Act is found to be incompatible with the Convention by the High Court, the Court can declare it so and the Act reverts to Parliament to be amended. Public authorities must also demonstrate compliance with the Human Rights Act. As the Audit Commission noted in 2003 the Human Rights Act puts service users at the heart of policy and decision making. This means that policies must now be human rights compliant and human rights issues must be assessed in decision making. Monica indicated the rights likely to have relevance around mental health issues as: Article 2 – the right to life The State is required to protect the right to life of the individual. It requires that it takes appropriate steps to protect individuals whose lives are at risk or take action against those who are a risk to others; Article 3 – the right not to be tortured or inhumanely or degradingly treated or punished This is an absolute right which requires that humane treatments are used in mental health services;

Monica stated that the state has clear responsibilities and duties in respect of people with mental health issues. It must guarantee the liberty and safety of the person, access to justice and remedies for the violation of rights. In the social and economic areas no person should be denied their basic needs, their human dignity, and their rights to shelter, warmth, health and education. Monica encouraged Rethink in Northern Ireland to fully utilise the protections under the Human Rights Act on behalf of those people suffering from mental ill-health whose freedoms may be restricted and who face discrimination. Ruth Sutherland Director – Northern Ireland

Liverpool Advocacy’s joint celebrations

irstly it was World Mental Health Day, and secondly it helped celebrate the opening of the much needed and long awaited family room at Broadoak, Acute Adult Mental Health Centre, Broadgreen Hospital, Liverpool. Along with other organisations such as the Joint Forum, Patients Council and Mental Health Consortium, Rethink Advocacy has long raised awareness of the need for families with children to have a designated private area for visits.

Article 5 – the right to liberty and security of the person Allows the State to detain people if they are considered to be of “unsound mind” and requires the detention to be overseen by a competent authority; Article 6 – right to a fair trial Provides for the right to a fair hearing in criminal and investigative hearings, and must have certain characteristics. These include the participant’s right to have a meaningful opportunity to state their case; a trial within a reasonable time; and a reasoned decision on conclusion; Article 8 – the right to respect for one’s private and family life, correspondence and home which persist whilst a person is in prison or hospital

• Jacquie Lloyd, Rethink Advocacy, Richard Burniston, Patients Council and Jackie Patiniostis, Joint Forum. winter 2005/06

your voice

keep fit 100 miles in 48 hours challenge

his event offers a brilliant way of raising money for Rethink. I did my first (and what I fondly imagined to be last!) 100 miles back in 1980 and the sponsorship was very generous. The Long Distance Walkers’ Association has been in existence now for many years and is very well established. Every year (amongst many other country walks) they hold the “big” annual event – 100 miles of walking over some pretty demanding territory such as Dartmoor or the South Downs. In 2006 the next Challenge Event is due to take place over Northumbria. The main reason for this article is to alert all walkers, fitness fanatics, masochists and fellow travellers to this event and say that you are very welcome to join me in May 2006. We do live, however, in a world of ever-tightening rules and regulations and the LDWA stipulate that all entrants without exception must be able to evidence their ability to take on an event of this nature by supplying certificates of at least a 50 mile non-stop walk in recent years. They say the walk (and I quote) “is a demanding event, requiring stamina

and a determination to carry on under adverse conditions. The route goes through areas that can be bleak, with low cloud, even in summer. It should only be attempted if you are competent in navigation, both in daylight and at night”. The route is across the Cheviot Hills and Northumberland farmland and crosses the border into Scotland. It will take place on Saturday 27th – Monday 29th May 2006. There will be those amongst the readers of this article who will want to take part in this event but, at this stage, might not necessarily have the experience demanded by the LDWA What I would strongly recommend is that you go to the event website www.northumberland 100.org.uk. and enquire about getting the required walking experience “under your belt”. Incidentally, it is worth adding that on my 1980 event, those that won and were way out in front were not the obvious fitness fanatics but actually quite elderly people in their late fifties and indeed sixties. There was a group of us at the time who most definitely saw ourselves as in the

ranks of the ‘superfit’ and I can assure you it was a very humbling experience to realise that we were simply incapable of keeping up with them. One of our group at the time was a TA Commando Engineer and he was absolutely staggered at their level of fitness and endurance – so for those older readers who would like to do the 2006 event, take heart! What is equally important as physical fitness is sheer will power and the determination not to give up. For those interested in more information, please contact me: colin.gillings@rethink.org. I shall be delighted to answer any questions. Between us we can potentially raise a good sum of money for our organisation. Colin Gillings If you are more of an “armchair walker”, but would like to sponsor Colin, please contact him on the above email address, or write to him at: Rethink Birmingham Information and Support Service, Room 11 Ruskin Chambers, 191 Corporation Street, Birmingham B4 6RP. Or you can donate via www.justgiving.com/colingillings

Rethink represented by Regional Reference Group Members at party conferences

uring September 2005, Grainne Currie, Regional Manager – North West Operations accompanied RRG Members to both Lib Dem and Tory conferences held in Blackpool. During the high profile conferences Rethink was invited to sit on a fringe panel, chaired by Andrew Bell, Sainsbury Centre for Mental Health, with healthcare professionals and politicians including Baroness Barker – Lib Dem Shadow Health, to discuss the joint IPPR and, Rethink report Mental Health in the Mainstream followed by a question and answer session. your voice

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Mental Health in the Mainstream sets out why mental health should be a mainstream priority for all policymakers. It puts forward a vision of what future response to mental health could look like and focuses on how the health system can be improved and offer better support for people with mental health problems and promote the mental health of the whole community. Alister Rowe and Kevin Brosnahan, Service Users and RRG Members, represented Rethink on the panel, making a huge contribution to the event and reflecting on their own individual experiences of mental health and how they have been affected by their illness. 29

Book Review from MARY NAPIER.

book review Emotional Geology

by Linda Gillard published by Transita

riter, actress and journalist Linda Gilliard has written this powerful novel, Emotional Geology. It is an intriging, well crafted book set in North Uist, one of the Western Isles of Scotland. The main character is Rose Leonard who is on the run from life and all its turmoil. She takes refuge with the simple people on the island, and she cocoons herself in work, silence and solitude in a house by the sea. But she is haunted by the past, in particular by memories of a love affair with Gavin which she cannot forget, and of her illness which was bi-polar effective disorder. Her insight into this mental health problem is very well intertwined within the story, and her writing on this, although very raw, is extraordinarily moving.

depression it caused her. We hear a lot about Gavin who was a mountain climber, and it transpires that Calum also loves to climb. The novel moves at a fast pace and we are introduced to the different characters who make up the book quite quickly.

I quote “I’ve been on medication for many years now and that has stabilised me, but I can’t work properly while I am on it. My feelings become blunted, I don’t see things, there’s just no joy, it’s a kind of living death. I’ve tried reducing the dose – I’ve stopped taking it once or twice – strictly against doctor’s order – but then I get ill, sometimes with dire consequences”. Luckily she meets a fellow soul on the island called Calum who is a writer of poetry, and Rose recognises one of his Poetry Books called “Emotional Geology”.

We hear about Rose’s daughter, Megan, right at the beginning of the book and later about when Megan visits her mother on the Island. It is a fraught relationship, and we learn why later in the story. We also learn about her neighbour Shona McAskill and her family. But the main character is Calum, who is a kindred spirit, but also a fragile younger man who has his own demons to exorcise. Fortunately we learn that in the end Rose leaves behind all her sadness and, although we will not give the story away, the ending is happy. However, along the way there is much grief, heartache and mental instability. It is very profound, and it gives a great insight into mental illness from the sufferer’s viewpoint. On a lighter note there are some wonderful descriptions of the scenery – “Rain falls on Uig and the pewter sea churns sickeningly as we disembark. On the steep green slopes white houses are scattered randomly, like sheep grazing on a hillside. They look tiny, clean and bright, a Toy town Village.”

As Rose is a textile designer they decide to do an exhibition together called “The Encumbrance of Words” – i.e. textiles inspired by poems and poems inspired by textiles. Calum offers to love her but each time she thinks back on her previous sad love, Gavin, and all the

Emotional Geology is a lyrical, intriguing and haunting novel, and it has been a most interesting and informative read. Further information on the book (ISBN 1-905175-07-8) or to read more about the author visit www.transita.co.uk

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y son Danny was diagnosed with schizophrenia 10 years ago. He spent 4 years in a medium secure unit and 18 months in a rehabilitation unit. He eventually moved into supported accommodation and settled down in his own flat. He attended college and trained to be a chef. He qualified as a chef and won several awards, for “overcoming adversity” and achieving successfully “against the odds”. He had ambition, hope and drive. He also had severe anxiety and panic attacks but managed to keep going, his dream was for us both to live and work in Spain. His first job was in a pub, as a commis chef. I took him to the interview and he was so very excited when he secured a job. He had finally got what he dreamed 30

about. Working was stressful, however; his medication made him tired, he worried about paying his rent and council tax and he feared the stress would make him ill again. He was advised to leave. He coped well with the disappointment but he felt he couldn’t improve his lifestyle. We often talked about his anxieties. He said he was tired of living on benefits, tired at being mentally ill and didn’t know what to do. In February this year he took his own life. My best friend and my only son took a massive overdose. As a mother I am writing this to comfort other parents and carers and to myself. I never imagined I would be able to live without my son, but I am somehow. At last I know Danny is at peace and is happy and I take comfort in that. If any parents would like to contact me, then please write. Sally Rawlings winter 2005/06

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or t i d E r a De

am a long-standing supporter of nsf/rethink and the parent of a schizophrenia sufferer, your literature is always interesting and frequently helpful. However, one topic appears to be ignored, that of the finances of people with mental health problems. My 46 year old son not only has mental health problems but also severe physical disabilities resulting from proven hospital negligence when an in-patient. He has been a recipient of disability living allowance and has a non-stressful part-time job with which he copes successfully although full time work creates unacceptable stresses both mental and physical.

22nd Conference on delivering Race Equality: Policies and Practice

His DLA has been severely reduced, apparently to compel him to “get on his bike”; the representations of his social worker and GP are disregarded. My son has been stable for some time but the new pressures caused by the lack of funds and therefore finding and keeping full-time employment are undoing the good work resulting from the efforts of the medical and mental health teams working with him.

Useful websites www.ukselfhelp.info/links (the section self help is very good)

Yes – I appreciate that funding has occasionally been abused but to penalise genuine recipients with established histories and diagnoses is heartless and ruthless. I look forward to your comments with any suggestions you may make.

26–27th April 2006 Rethink’s staff conference contact: www.name.org.uk

www.healthcare-events.co.uk (details of forthcoming conferences)

Angela Raffles In response to Angela’s letter, the National advice service writes

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our letter about the reduction in your son’s Disability Living Allowance echoes so many of the calls we receive from carers at the National Advice Service. We can appreciate what you say about the effect his changed financial status is having on his mental health and can make a few suggestions as to how to challenge the reduction in his Disability Living Allowance. The first thing to say is that there is a 1 month time limit from the date your son was notified of the change in his DLA in which he can apply for a revision in the decision. This means that his application will be passed to someone else in the DWP department to look at. If that does not result in a change for the better, or if the 1 month deadline has been passed, then your son could appeal against the decision to a tribunal. It is useful to gather together further evidence to support an application for a revision of the decision. This could be in the form of a diary over a period of say 2 weeks which shows clearly the amount of support or attention your son needs The National Advice Service has diary sheets which you could use to log the times your son needs help. In addition, as you are probably the person who knows him best, it is often useful for the carer to send a detailed letter setting out what help their relative needs. Two further points to make: if someone in the Department of Work and Pensions has used the phrase “to get on his bike” this is grossly inappropriate and could be challenged. And finally you mention in your letter that your son has “severe physical disabilities resulting from proven hospital negligence” and we hope that this has been taken up by a clinical negligence solicitor. If you would like to ring the National Advice Service about anything arising form this letter or any other matter, the Service is available for calls weekdays, 10 am-3pm (except Tuesdays and Thursdays 10am – 1pm) 0845 456 0455. National Advice Service your voice

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keep us posted!

Deadline for copy for the next edition: 10th March 2006 Send your letters to: Terry Hammond – Editor Your Voice 40 Sea View Netley Abbey Southampton SO31 5BQ Try to restrict the length of your letters to 150 words maximum. Your Voice reserves the right to edit letters. 31

• a regular series of features on aspects of mental illness produced by Rethink’s National Advice Service

fact file

Complementary Therapies Complementary therapies are sometimes used in addition to the conventional medical treatments prescribed for people with mental health problems. They may be used to try to regain better control of symptoms or to relieve side effects caused by medication. Using complementary therapies is in line with a holistic approach to treating people, through looking at the individual as a whole (including physical, psychological and spiritual needs) rather than simply at the illness or its symptoms. Complementary therapies are not as well tested and regulated as conventional medical treatments, and so the evidence base for their effectiveness can be patchy. Not all therapies will work for everyone, but this is no different from antipsychotics and other drugs which also affect people differently. It’s important to consider the cost of using complementary therapies; how high this is will depend on which therapy you try. Physical treatment as therapy Physical therapies may help both while you are unwell and in preventing a relapse when you are well. They may also help with some of the physical side effects of medication. Massage is a form of structured or therapeutic touch which can be used to relax, to relieve muscle pain and tension and to bring comfort through contact with another human being. Massage may lessen feelings of hopelessness and despair. Relatives or friends can be taught to massage the person who is ill, which may help to reduce anxiety and bring comfort to both people. Aromatherapy is the use of aromatic, highly concentrated essential oils (from petals, leaves, stems, of plants or trees) during massage. Different oils have different effects. Like massage, aromatherapy may reduce stress, tension and anxiety and help in alleviating mental distress. Reflexology is a specialised form of Chinese foot massage. The theory is that different areas on the sole of the foot represent and are connected to the body’s internal organs. It is claimed that symptoms can be relieved by systematically putting pressure on these points, which also promotes relaxation, gives relief from stress, restores energy and moderates highs and lows of mood swings. Acupuncture is a traditional Chinese medicine which involves placing sterile acupuncture needles at different energy points below the skin, which may have effects on the circulatory and nervous system in the body. It is said to help to release the flow of chi (life force) and restore health and balance in the body. During acupuncture the body releases endorphins, natural chemicals which can relieve pain, relax muscles and increase feelings of well being. Unconventional medicines Homeopathy is based on the theory that a substance which can cause similar symptoms to those of the condition being treated may be used in tiny amounts to treat those symptoms. An increasing number of GPs are now trained in homeopathy. Homeopaths do not claim that homeopathy will cure mental

illness but use it to try to improve symptoms and side-effects of medication. If you are interested in this type of treatment you should discuss it with your doctor.

Herbal medicines are based on active natural ingredients. Perhaps the most well known herbal medicine for treating the symptoms of mental illness is St John’s Wort (hypericum). This has been linked to the relief of mild to moderately severe depression. If you are interested in trying herbal medicine, first check that the therapist is properly qualified and then talk to your psychiatrist. Doctors are often cautious because they are unsure of their effects and possible interaction with other medications you may be taking – for example, St John’s Wort reduces the effectiveness of the oral contraceptive pill. Other complementary therapies Music therapy will often involve both listening to, and improvising and creating music. Music therapy is reported to help both interpersonal and communication skills, which may both have been compromised through mental illness. Animal-assisted therapy involves people interacting with calming animals such as dogs, cats and horses (equine assisted therapy). Interaction with animals is believed to help people with mental illness with their interpersonal skills, communication, and helps to reinforce independent and daily activities. Animals may also provide companionship to people who through their illness have difficulties interacting and socialising with other people. Choosing a complementary therapist The NHS rarely provides complementary therapies for people with mental health problems and you will usually have to see a private therapist. If you are considering using complementary therapies, the following suggestions may help you: • Always use a qualified therapist who belongs to a professional body. • Check the cost of treatment beforehand to make sure you are being fairly charged. You may have to shop around. • Talk it over with your doctor or nurse and ask for their advice, especially if you are going to have a therapy which involves taking pills or medicines. • Ask your doctor if there are complementary therapies available at your treatment hospital, or through your GP’s practice, or if they can recommend any therapies or practitioners. • Choose the complementary therapy that suits your individual needs. Other people may be able to give you an idea of what worked for them. • Don’t be misled by promises of cures. No reputable therapist would claim to be able to cure severe mental illness. Further Information British Complementary Medicine Association, Tel: 0116 282 5511 email: info@bcma.co.uk Web: www.bcma.co.uk Federation of Holistic Therapists, Tel: 0870 420 2022 email: info@fht.org.uk Web: www.fht.org.uk winter 2005/06

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