Your Voice
The magazine for members of
spring 2006
Double Victory Government backs down over the proposed mental health act and acknowledges Rethink’s concerns on cannabis pages 8-9
The future care of mental illness page 11
your voice
spring 2006
1
contents
2
personally speaking campaigns
3-6
carers
6-7
health
8-9 10
benefits
11-14
feature
15
staff diary news
16-17
feature
18-20
feature
21-23 24
fundraising
25-26
group profile men’s week
26
news
27 28-29
obituary book review
30
letters
31
fact file
32
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 5th Floor Royal London House 22-25 Finsbury Square London EC2A 1DX 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
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Personally speaking... Changing public attitudes
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here can be few Rethink members who have not seen the controversy over our pilot campaign to tackle stigma in Norwich. Along with a large number of events in the city led by people with severe mental illness and their carers, we ran advertising campaigns and local media coverage to raise awareness and understanding. One small part of the campaign gained national attention: the unveiling of a statue of Winston Churchill in a straitjacket, to symbolise how people with mental illnesses are nowadays held back by shackles of stigma and discrimination, unable to find work or to contribute to society. The event proved deeply controversial particularly for people who saw the national coverage, but who may not have been able to see the statue in the context of the local campaign. Churchill, of course, wrote publicly about his bouts of profound depression, which he famously called his ‘black dog’. To me, he was an even greater hero than most people realise because he achieved all he did whilst coping with severe depression. But if he was in politics now, how confident could we be that he would even survive the glare of media attention as an MP, let alone as Prime Minister? Would the stigma and prejudice in society now have stood in his way, and where would we have been as a country then? We have apologised to those offended by the statue, and provided background material about the campaign at www.rethink.org In one survey after another, Rethink members and the people who use our services put stigma and discrimination amongst the top problems they face and the top priorities for us as a charity to address. We know that stigma is deeply ingrained. It adds fiercely to the struggle people face in finding jobs, homes, friends, almost every aspect of life. We will not shift the problem without taking strong measures, alongside the slower pace of the face to face work which so many members contribute to. We will be reviewing all parts of the Norwich experience, including the Churchill statue, learning the lessons and taking stock of the public response. So far the reaction locally has come out very positive, which may not have been apparent from the national media coverage. We will study and learn from every comment received, critical or congratulatory. Ending stigma will take time and careful thought. But just as with every other campaign for civil and human rights, it will also take courage.
”
Cliff Prior Chief Executive, Rethink spring 2006
your voice
JANE HARRIS outlines Rethink’s tremendous victory in getting the Government to listen to its fears about cannabis
campaigns double victory
Rethink win the Government over cannabis
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ethink has achieved a great victory in its cannabis campaign, achieving everything that we set out to do.
It has been a hugely successful campaign that has delivered 100 per cent of what we asked for only two years ago: • A recognition that cannabis poses a serious risk to mental health • A Government pledge to invest in new research into the role of cannabis in causing mental illness • A Government pledge to launch a massive public education campaign • A Government recognition that tougher laws that could criminalise people with mental health problems is not the answer It is unusual to get everything you ask for in any campaign, particularly one that has such a controversial edge to it – but together we have achieved complete success. A huge, big thank you to everyone who has taken part and supported Rethink’s campaign to get the serious mental health risks posed by cannabis recognised by Government.
So, how did this all happen? Where did the campaign come from? For many years, Rethink’s members have voiced their beliefs about the role which cannabis may play in the onset of mental illness. Rethink has taken these concerns seriously and has met with Department of Health and Home Office officials and Ministers to voice these concerns. However, Rethink’s greatest opportunity to change the prevailing views about cannabis came with the decision to reclassify cannabis.
Reclassification – January 2004 In 2001, the Advisory Council on the Misuse of Drugs (a Government body) recommended that cannabis be reclassified from a Class B to a Class C drug. The Home Secretary at the time, David Blunkett, took the council’s advice and in January 2004, cannabis was reclassified from to Class C, with an information campaign explaining this change. Rethink did extensive media work at the time of classification, pointing out research on the link between cannabis and mental illness and the Government’s failure to warn people about mental health links in the information campaign. your voice
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The Home Office and Department of Health then announced a new joint project to provide information materials to people with mental illness on the issue of cannabis. Rethink was the only mental health charity asked to advise throughout the project. The Government obviously saw Rethink as a key expert on the issue. We worked with key academic researchers and psychiatrists in the field, such as Robin Murray and Zerrin Atakan from the Institute of Psychiatry. In December 2004, we sponsored a two-day conference at the Institute entitled ‘Cannabis and mental illness’, the first of its kind in the world. This work ensured that Rethink was widely considered one of the ‘experts’ on cannabis. But our message reached the public too, through extensive media coverage of the issue – we had interviews on radio stations such as BBC Radio 4 and national newspapers such as The Observer.
Anniversary of reclassification – January 2005 As the anniversary of reclassification was approaching, Rethink contacted the Health Select Committee to suggest an inquiry into the evidence about the risks of cannabis use. Doug Naysmith MP, a member of the committee, confirmed his support for such an inquiry. Our press release got even more coverage than the year before – it was the lead story on BBC breakfast and news programmes, ITV news, Channel 4 news, BBC Radio 4 ‘Today’ programme and appeared in The Daily Telegraph, The Observer, The Sunday Express, The Sunday Times and The Independent on Sunday. As a result, the Department of Health announced a review of the evidence on cannabis – exactly what we had said was needed for over two years. In March 2005, the new Home Secretary, Charles Clarke, said that he would ask the Advisory Council on the Misuse of Drugs to look again at cannabis, the evidence on mental illness and the issue of classification.
The Advisory Council and the Home Secretary’s decision – January 2006 Rethink contacted the Advisory Council repeatedly, asking to give evidence. We then asked our members to write and explain their experiences – 27 service users and carers kindly wrote to us with their views. In September 2005, we submitted a comprehensive document detailing the academic evidence on cannabis and mental illness and – crucially – the views and experiences members sent to us and contributed to our website 3
campaigns double victory discussion on cannabis. Later in the month, two members of Rethink staff and a service user gave oral evidence to the committee – we were one of only three charities and the only mental health charity invited to the committee to give evidence. This in itself was a major victory for Rethink. On the basis of the views of service users and carers contacting us and the statistics on usage of cannabis, we argued that cannabis should remain at class C, as usage had not gone up since the classification had changed (in fact, it seemed to have gone down slightly). But we said that the Government needed to invest in a major health education campaign to tell people about its health effects. This approach has worked for smoking, so it could work for cannabis too. We also said that more research needed to be funded into the effects of cannabis and into the experiences of service users and carers, whose voice is not often heard in this debate. One member of the council told us later that our presentation had been the best of the whole day. Immense thanks must go to the service user who participated – his telling of his story really moved the panel. At the beginning of the year, our band of e-campaigners sent emails to the Home Secretary, urging him to invest in health education and research rather than a change in the law. We also contacted MPs who put down an Early Day Motion (a sort of petition signed by MPs) expressing support for Rethink’s campaign. The Advisory Council’s report was released in January 2006. It recommended more research, better health education and for cannabis to stay at class C. The Home Secretary, Charles Clarke, then announced that the Government would stand by the recommendations of Advisory Council. After his announcement in the House of Commons, Rethink and our recommendations were specifically mentioned, another great achievement. In the week before the Home Secretary’s announcement, Rethink received more media coverage – all major TV and radio stations and newspapers covered this issue and most mentioned Rethink. For example, chief executive Cliff Prior appeared on Newsnight, ITN News and BBC 1 One o’clock news; and other staff and members appeared on Channel 5 news, Radio 4 ‘You and Yours’; Radio 4 ‘PM’, Sky News and Radio Five Live. Rethink also had coverage in The Guardian, The Daily Telegraph, The Times and the Daily Mirror. So, not only 4
have we achieved the aims of the campaign, but we have also increased the public’s and politicians’ awareness of Rethink. Of course, we must now make sure that the Government comes up with the necessary funding to achieve its promises – and we still need help from all of you to make sure that: • The education campaign is saying the right things to the right people • The new research is seeking answers to the right questions • New approaches are developed to help people reduce and stop their cannabis use.
We want Rethink to be involved not only in the raising of this issue, but also in the solutions to it – watch this space! Many thanks to all those who have helped us with this amazing campaign victory.
Want more information about our campaign? Contact Jane Harris, Senior Campaigns Officer tel: 020 7330 9131 or email campaigns@rethink.org
Want to get involved in all our campaigns? Even if you don’t have much time, you can help our campaigns be more successful. Become an ecampaigner and send emails to decision-makers with Rethink messages. Send an email entitled ‘become e-campaigner’ to campaigns@rethink.org.
Are you a service user or carer with views and experiences on cannabis? Send them to us so we can publicise them – on our website or in our publications. We will keep them anonymous if you want us to. Post them to: Campaigns Department, Rethink, 5th Floor, Royal London House, 22-25 Finsbury Square, London EC2A 1DS or email campaigns@rethink.org
spring 2006
your voice
campaigns double victory What’s happened to the Bill?
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lans for a new Mental Health Bill have been dropped after years of campaigning by Rethink and the Mental Health Alliance. This is a great victory. The Government had been committed to introducing a new Bill for over seven years. We would like to thank everyone who has contributed to this success. But more needs to be done. The Government has now announced that it will make a number of amendments to the current 1983 Mental Health Act instead. It seems that the Government wants to rush its new plans rather than take time to consider how to get the best mental health legislation we can. Rethink believes that the new plans must be subject to a formal consultation like the last Bill and to a full pre-legislative scrutiny committee, as were the old proposals. The amendments being proposed are:
• Creating ‘supervised community treatment orders’ – people could only be put on these after they had been treated under section in hospital for at least 28 days. This is a much more restricted kind of community treatment than the Government was previously proposing. Rethink is still concerned that there should be time limits on these orders, they should be restricted to a very small group of people and should only include conditions on residence and treatment, not on general ‘conduct’. People with mental illness should not have their fundamental civil and human rights restricted permanently when they have committed no crime. • The definition of mental illness will be made much wider as previously proposed. But there will be exclusions so that people who have a substance use problem, but do not have a mental illness, cannot be treated under the Act. We think there should be exclusions for political and cultural beliefs as well so that mental health legislation cannot be used for social control. • Inserting a new condition that ‘appropriate treatment is available’ and deleting the current provision that people must have a treatable condition. Rethink believes that the idea of ‘appropriateness’ is too vague. People should not be given treatment unless it gives them some kind of therapeutic benefit. Detention without therapeutic benefit is not the business of the health service. Sadly, two parts of the old proposals which were positive have now been dropped. The idea of everyone going to a your voice
spring 2006
Tribunal after 28 days has been rejected. People will not automatically go to a Tribunal until after six months – this period will be reduced as capacity increases. Rethink told the Government continually that there were not sufficient staff available for a 28 day Tribunal and that great investment would be necessary to achieve this. There need to be clear targets to reduce the six month waiting time – we can’t assume that this will happen unless people are held to account. The plan for a legal right to advocacy has also been dropped. The Government says that advocacy will be increased by other means, that this can be achieved without a legal right. Rethink agrees that access to advocacy can be achieved through other means, but it has not yet happened and it is not clear how the Government is proposing to achieve this. We need a clear programme of work and ringfenced funding for advocacy if we are ever to move beyond the unacceptably patchy provision of services we currently have. Finally, Rethink is very concerned that one of the main problems with the 1983 Act is not being addressed by the Government. Currently, people from black and minority ethnic communities are disproportionately held under the Act. A principle of respect for diversity needs to be added to try and address this horrendous situation. The Government has, however, said that they will conduct a Race Equality Impact Assessment on the new proposals – we need to make sure that this is not a rush job. Please help us get the best possible legislation we can.
Write to your MP! Tell him or her that you want the new proposals to be subject to pre-legislative scrutiny and a formal consultation. Say that you want a right to advocacy, principles to increase race equality and a therapeutic benefit condition. Tell your MP about your experiences of mental health services – you almost certainly know more than they do! If you don’t know your MP’s name, find your postcode and ‘phone 020 7219 4272 or use the website www.locata.co.uk/commons/. The address for all MPs is: House of Commons, London SW1P 0AA.
Sign up for the lobby! As soon as a Bill is published, the Mental Health Alliance will be organising a lobby of Parliament. To make sure that you’re told about it, register with the Alliance coordinator, Anna Bird. 5
carers Ask friends and family to sign the Alliance petition! The Alliance is also organising a petition. We are really trying to show that it’s not just service users, carers and mental health professionals who are opposed to this Bill, but other people too. So please ask your friends and relatives to sign it. To do so, send an email with your name, occupation and town/county of residence to Anna Bird, co-ordinator of the Mental Health Alliance (anna.bird@scmh.org.uk). Or send to Anna Bird, Mental Health Alliance, c/o SCMH, 134-138 Borough High Street, London SE1 1LB.
The MHA will hand the petition to the Government in 2006 as part of the ongoing campaign on the Bill. How to convince your friends and family? Tell them that the Bill is opposed by a number of organisations, including the Royal College of Nursing, the Law Society and the National Union of Students, as well as mental health charities and professional organisations. It has been called ‘unethical and unworkable’ by a Parliamentary committee. Ask people to sign up now!
Carers Week
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arers Week 2006 runs from 12th to18th June. It is the second year that Rethink has been a part of the consortium that runs Carers Week. This year’s theme for Carers Week is carers’ health, both physical and mental health. Carers Week are producing a leaflet specifically about mental health and caring. Why is Rethink involved? Because mental health carers need to be in the mainstream of the carers movement, to make sure that people get the support and services they need and deserve. Carers Week is now a huge event, generating hundreds of pieces of coverage in local media. It is important that mental health carers are represented within this coverage – it will help to destroy the prejudice, ignorance and fear that surround mental illness.
and information sharing policies from the local Mental Health Trust. Following on from feedback last year from groups and services, we have produced some mental health specific materials to help. We have created: • A briefing giving facts and figures about carers of people with mental illness, together with letterwriting campaign ideas • A press release on mental health caring and Carers Week • A guide to using the press release • A list of possible events that you could run, ranging from the large scale to less resource intensive • A guide to running events.
We want to help make mental health carers a major part of Carers Week in 2006. Please think about what you can do to help; perhaps you could: • Organise an event – see our guide for different options
• Get some publicity for mental health carers in your area, using our press release
To receive a pack of materials to use during Carers Week please send an email to campaigns@rethink.org, phone 0845 456 0455 or write to Rethink Campaigns, 5th Floor, Royal London House, 22-25 Finsbury Square, London EC2A 1DX.
• Run a letter-writing campaign locally about health checks for carers by the local Primary Care Trust
Let’s make Carers Week 2006 even bigger than it was for Rethink in 2005! Please do your bit!
• Remember to register your event with Carers Week, by going to www.carersweek.org or contact Rethink Campaigns for a registration form
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Groups which register with Carers Week will also receive a pack of materials, including a press release. Please use whichever materials you feel are most appropriate for your event.
spring 2006
your voice
royal visit Princess Anne’s visit to The Archway Centre
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Rethink service celebrated its refurbishment in style – by welcoming HRH The Princess Royal to officially reopen the centre. Archway community mental health project in Walsall was completely rebuilt with funding
often associated with mental illness. Mr Farmer also commented that supporting people with mental illness and their families is crucial at all stages and that projects like Archway are instrumental in giving people the chance to recover the quality of life they want and allowing people to access help in places which treat them with dignity and respect. Whilst officially unveiling a plaque to mark the reopening of Archway, the Princess spoke about her admiration for the centre’s work and recognition that modern community mental health day centre’s were crucial to helping those with mental health problems on the road to recovery. She thanked Archway staff for the invitation and commented on her enjoyment at being able to talk to members of the centre.
Before departing, the Princess was invited to sign the centre’s visitors book to record the day’s events. Commenting on the new centre one Archway member said: “I would like to • Paul Farmer with Princess Anne, Geoff Warnsby and Bob Banner thank Rethink for the new building that they’ve provided for us. They’ve seen our need and provided even better than that for us. The from Walsall PCT and Walsall social services and was design team have provided a lovely open plan main room officially reopened on February 22nd after Service Manager for us. Thank you once again Rethink.” Geoff Warnsby wrote to Buckingham Palace last October. Archway is open seven days a week for anyone Speaking about the event, Geoff commented, “I was experiencing or caring for someone with mental health surprised, but delighted, when Princess Anne very kindly problems. Centre staff work in partnership with accepted my invitation to reopen Archway. On the day I individuals to achieve a personal recovery plan and aim to invited Archway members, staff, and representatives of build confidence and self-worth in its members. other external agencies to attend the royal visit. The Archway’s ethos is firmly fixed on providing support and Princess Royal spent an hour talking mainly to service advice with an emphasis on social inclusion and users, and she seemed genuinely interested in what they meaningful had to say. Everyone has since said that they were membership pleased that she had been to the centre and was such a involvement. nice person that she had put everyone at ease.” Archway has supported over 200 Princess Anne also was welcomed by Rethink’s Director people with severe of Public Affairs Paul Farmer, Chair of Trustees Bob mental illness in the Banner and the Mayor and Mayoress of Walsall. She was last two years. then presented with a posy by Archway member Sonja. The Princess spent over an hour in the centre being Archway also offers shown the impressive modern facilities which include an practical support on open plan living room, quiet room, kitchen and dining issues such as room talking with staff and service users. housing benefits and employment and can assist in referrals to other mental Paul Farmer then addressed the audience and thanked health services. Services offered include education, the Princess Royal for her attendance and support; therapeutic groups, vocational guidance and stating that a royal visit was particularly important in complementary treatments such as pet therapy. helping to break down the stigma and discrimination your voice
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health
Smoking is now banned in open spaces in Scotland and will be banned in the UK next year. In this article RUTH OHLSEN, Clinical research Nurse from the National Psychosis Unit, asks the question why do people risk their life with nicotine
Smoking and mental illness: why?
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ince the 1950s it has been widely accepted that cigarette smoking causes lung cancer. Smoking is responsible for a huge percentage of preventable deaths worldwide. In the UK, smoking kills over 120,000 people a year – 13 people an hour. The manner of death includes lung cancer, emphysema, stroke, heart disease, chronic obstructive airways disease – none of which are pleasant ways to die, or to suffer whilst living out an unfinished life. And it doesn’t come cheap: a packet of cigarettes costs over £5. Yet a vast number of people continue to ‘take up’ cigarette smoking and continue to smoke, and individuals who are already established smokers fail time and time again to ‘kick the habit’. WHY? What is there about this drug, nicotine – the active ingredient in cigarettes – that causes otherwise sensible, responsible people to take such foolhardy risks with their lives and health? There is now an inverse relationship between smoking and higher levels of education and social class, though this relationship did not exist 60 years ago – in the 1940s and 50s, nearly 80% of men in the UK were smokers, and there was no class distinction. As the association between lung cancer and smoking has become more obvious and evidence-based, people from higher social and educational strata have either stopped smoking, or never started; this trend however has not translated downwards to the socially and educationally deprived, many of whose number suffer from mental illnesses. Which brings us to another mystery that surrounds the smoking enigma – why is it that so many people with mental health problems smoke? Smoking is positively associated with many mental illnesses, including depression, bipolar disorder, anxiety disorders and schizophrenia. Cigarette smoking is often described by anxious or depressed smokers as being beneficial in that it appears to restore concentration and a feeling of relaxation. However, it is likely that this is partially a relief from nicotine withdrawal in chronic smokers, and not wholly a benefit of nicotine per se. An overwhelmingly larger proportion of people with a mental illness are cigarette smokers; up to 90% of people with schizophrenia and up to 70% of people with other psychiatric diagnoses vs 26% of the general population. People with schizophrenia tend to smoke stronger cigarettes, and to extract more nicotine from each cigarette smoked, possibly because they inhale in a different manner. Furthermore, there is evidence that the majority of people who do go on to develop a mental illness are already cigarette smokers, begging the question of whether nicotine addiction is a result or even 8
a cause of mental illness, or, the most likely explanation, that there is a genetic connection between the two. Family members of people with mental illness, whether themselves affected or not, are far more likely to smoke than members of unaffected families, which bolsters the theory of a genetic link between smoking and schizophrenia.
Activation of dopamine receptors The answer may be in the brain. Nicotine increases dopamine transmission via its action on acetylcholine receptors in the brain. The cholinergic (nicotinic) receptors are usually stimulated by the neurotransmitter acetylcholine. This may produce an excitatory and pleasurable sensation, releasing other neurotransmitters such as serotonin, noradrenaline, acetylcholine, more dopamine and beta-endorphins, often described as the body’s ‘natural opiates’. As the natural progression of a cigarette smoking habit is to increase nicotine consumption, the body is ‘tricked’ into thinking that more acetylcholine receptors are needed to cope with the extra doses of ‘acetylcholine’ (nicotine). After a while, the body adapts by producing more acetylcholine receptors, which in turn tricks the brain and body into thinking it needs more nicotine, and so on. This actual change in brain chemistry consequent to repeated nicotine dosing may be one of the reasons why some people find smoking cessation so difficult and experience unpleasant ‘anticholinergic’ withdrawal symptoms such as restlessness, difficulty concentrating, constipation and increased appetite. The area of the brain called the nucleus accumbens, or the ‘reward’ or ‘reinforcement’ centre is where the primary dopamine activation occurs when nicotine and other drugs of addiction such as opiates (heroin, morphine), stimulants (cocaine, amphetamines) and alcohol (but not caffeine) are administered. Similar responses are produced in the brain by all these drugs, and addiction progresses along a ‘dose-response’ curve – over time, the body needs more of the drug to produce the same pleasurable effects as it did originally; known commonly as building up ‘tolerance’ to the drug; likewise, craving for the drug becomes stronger over time when it is withheld.
Neutralising antipsychotic medication Conversely, most of the drugs used to treat schizophrenia operate on the opposite principle; that is, they block dopamine receptor activity. Is the reason so many schizophrenic patients smoke that they are trying to ‘neutralise’ the effects of their medication? Cigarette smoking affects the rate at which the body ‘clears’ itself of some antipsychotic drugs; especially olanzapine and spring 2006
your voice
health clozapine, and cigarette smokers usually require higher doses of these medications to achieve the same efficacy as non-smokers. However, clozapine, which is the most effective antipsychotic available, may act in a similar manner to nicotine, activating dopamine receptors in areas of the brain that affect our ability to feel pleasure, thus inducing a feeling of well-being. Patients who have switched from another antipsychotic to clozapine have found it easier to reduce smoking or give it up altogether, maybe because they are receiving their ‘reward’ from the clozapine.
of some antipsychotic drugs. Some older drugs, such as haloperidol, frequently cause unpleasant side effects such as Parkinsonism (mask like face, reduced movement, limb stiffness) and akathisia (restlessness, shuffling, and inability to relax), as well as a ‘slowing down’ of thought processes, memory and problems with attention. Smoking may attenuate these side effects because nicotine, being an acetylcholine activator or agonist, releases dopamine in the same areas where these drugs block it.
The rate of smoking in people with schizophrenia seems to be associated with the severity and nature of the symptoms. Although one study showed that smoking seemed to reduce negative symptoms, such as social withdrawal and apathy, other studies found that people experiencing positive symptoms of schizophrenia, such as hallucinations (voices), smoke more heavily than those with more negative symptoms.
Several studies have shown that improvement occurs in Parkinsonian side effects, akathisia and cognitive function – especially memory and attention span – after the administration of nicotine. Similar findings with regard to cognition have been reported in patients with Alzheimer’s disease and attention-deficit hyperactivity disorder (ADHD).
Sensory gating A high percentage of people with schizophrenia have subtle differences in their brains, one of which is known as the ‘auditory gating deficit’. This phenomenon means that people with schizophrenia react more strongly to repeated sounds. On hearing an initial sound – such as a burglar alarm – people with and without schizophrenia will react in a similar manner. However, when the sound is repeated, rather than becoming accustomed to the sound, and reacting less strongly, people with schizophrenia react in the same way as they did upon hearing the original sound or stimulus, and are unable to ‘block it out’ selectively, the result being that they feel constantly ‘bombarded’ by noise. This deficit in the brain is almost certainly genetic, and people with the auditory gating deficit have abnormalities in the Alpha-7 nicotinic receptor gene. However, smoking a cigarette restores the gating ability for about 15-20 minutes afterwards. Thus, it might be that smoking is a form of self-medication for people with schizophrenia, and smoking cigarettes may alleviate some of the distress and the distracting influence of auditory hallucinations. Increased ability to concentrate and improvements in memory have also been cited by many smokers as reasons for continuing to smoke. The cognitive deficits which are a feature of schizophrenia and, to a lesser extent, bipolar disorder and depression may be partially alleviated (or at least perceived to be alleviated) by smoking, perhaps accounting to some extent for the high ratio of smokers: non-smokers in these cohorts.
Reduction of antipsychotic side effects Another ‘benefit’ of smoking for people with schizophrenia is that it seems to reduce the side effects your voice
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Smoking is associated with a variety of mental disorders, including anxiety, depression and schizophrenia. Smoking may be perceived as a way of relieving stress, improving concentration, and providing a “reward” by activating dopamine receptors in the brain. The disproportionately high percentage of smokers with schizophrenia might be partially explained by other factors including: • Smoking may alleviate negative symptoms by activating dopamine receptors • Smoking restores the sensory gating deficit, decreasing the level of stimulation “bombarding” the brain and affording some relief from auditory hallucinations • Smoking may “neutralise” the effects of antipsychotic medication • Smoking may reduce some side effects of conventional antipsychotic medication and improve cognition in people treated with these drugs. Although these effects may be perceived as beneficial, there is a pressing need for the development of compounds that can be helpful without causing the devastating morbidity and mortality resulting from cigarette smoking. Drugs that may selectively activate dopamine and nicotine receptors may provide the answer, offering the ‘reward’ sought by mentally ill smokers without causing the terrible damage wrought by addiction to cigarettes. Suggested reading Allen Carr: Allen Carr’s Easy Way to Stop Smoking (Penguin) Mentally Ill: Smoke a lot: http://mentalhealth.about.com/library/weekly/ aa112300a.htm Joan Arehart-Treichel: Smoking and Mental Illness: Which One’s the Chicken? Psychiatric News October 3, 2003 Volume 38 Number 19, Page 34 9
benefits
JANE HARRIS explains the proposals on the Government’s Green Paper regarding incapacity benefit reforms
Incapacity Benefit reforms
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he Government has recently published a Green Paper containing proposals to reform Incapacity Benefit (IB). We know that many of our members are worried about what this could mean for them. It’s important to remember that the changes will only apply to new claimants of IB. Current claimants of IB will not be affected, though they may get access to new services.
What’s it all about? The idea is to replace IB with a new benefit, called Employment and Support Allowance. If someone was unable to work and claimed this new benefit, they would initially be put on a ‘holding benefit’ which would pay the equivalent of Job Seeker’s Allowance for up to three months. Within this time, they would be given an assessment of their abilities to work and what extra support they might need to work. Most people would also be required to attend an interview with a Jobcentre adviser during this period, but advisers would have the discretion to allow some people not to attend. The assessment itself is to be re-designed. After the assessment, people would be put into one of two groups. The majority of people would be expected to devise an action plan with a personal adviser. This could include voluntary work, permitted work, going on a Condition Management/NHS Expert Patients programme, JobCentre Plus/external training, meeting an NDDP Job Broker/Disability Employment Adviser, or getting Cognitive Behavioural Therapy. Their benefit will be higher than at the assessment stage and higher than the current long-term rate of IB. But if they do not abide by the action plan, their benefits can go gradually down to the level of JSA. The other, smaller group of people will not be expected to engage in any job preparation activities. They will be paid a higher level of benefit after the medical assessment, which will be higher than the current rate of IB. They will also be able to access support to get back to work if they wish. If people have fluctuating conditions and their condition deteriorates, Job Centre Advisers will be able to recommend that they are moved from the first group to the second at any time. A raft of new services, known as the ‘Pathways to Work’ programme, will be rolled out across the country. This will mean that people on IB can access support like Condition Management Programmes, which help people to regain confidence and learn to manage their condition. 10
A £40 per week ‘work credit’ will also be paid to people on IB who find jobs.
What does Rethink think? Rethink is concerned that too much pressure will be put on people to find jobs. This could cause stress and anxiety and may even cause people to relapse. This is a very real concern. There is no evidence that people with mental illness should be compelled to find jobs; people will find work when they feel ready to. Forcing people to find work is like trying to help someone with asthma get fit by strapping them to a running machine. We are also very concerned about how much Job Centre staff understand about mental illness. Most only receive about a day’s training and this is unlikely to assist service users and carers. Given that 40% of people claiming IB have a mental illness, we think about 40% of people’s training should be about mental illness. We also want to ensure that employers’ discrimination is challenged effectively. Currently, only about 40% of employers say that they would employ someone with mental illness – the figure for severe mental illness may be even lower. Unless this is challenged effectively, how can people be expected to find work? It’s like asking people to go through a locked door, without giving them the key.
What’s Rethink doing? As soon as the proposals were announced, Rethink was in contact with MPs and members of the House of Lords, to make sure that they knew our views about the issue. Two MPs and one Baroness said that they would use information from us in meetings with the Secretary of State, John Hutton. We have also organised an e-campaign for people to write to their MP about the reforms. Our Chief Executive Cliff Prior has met repeatedly with ministers and officials at the Department for Work and Pensions and we have invited officials to visit our employment services. Rethink gave evidence to the Work and Pensions Committee in the House of Commons at the end of February, alongside Mind and the Royal College of Psychiatrists. We talked about the need to get the redesign of the assessment right and involve service users and carers, the importance of addressing employers’ stigma and giving proper training to Job Centre advisers. continued on page 17 spring 2006
your voice
PAUL SHELLEY is the Associate Editor of the internatonal journal Psychiatric Nursing Research – here he talks about what the future holds in terms of care for people with mental illness
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Future care of the mentally ill During the early mediaeval period in England the belief was that those mentally ill who were often the focus of witch hunting and deemed to be afflicted by dark forces involving demonic possession should not be the responsibility of the state but of the friends and relatives of the patient. As we move through the 21st century our endeavour must be to transform with some urgency to a form of mental health care that is driven by appropriate research principles and changing demographic values. To date society has failed on all accounts to compassionately deal with these situations. The future health policy initiatives are again struggling to develop and cope with the way forward.
Past echos Gregory Zilboorg in 1941 examined the work of a number of 16th century scholars who produced one of the first reviews of the care of the mentally ill in England. These distinguished intellectuals were Cornelius Agrippa, Delia Porta, Cardano, Paracelsus, Lemnius, Reginald Scotus and Johannes Weyer (circa 1486 – 1588). In the mid 1960s Ackernecht endorsed Zilboorg’s work by reporting on how important it was that those 16th century scholars
had produced a report that was seen as a progressive vision if not reforming episode of mental health care. Their main academic achievement was to offer a conscientious and thoughtful exploration regarding demonic possession, current care initiatives, and the future treatment of the mentally ill. Through their pragmatic investigation including such areas as despair and melancholy these visionary researchers made important advances into exposing and explaining the mind of man. During the 16th century, while demonology and witch-hunts continued, there were again those who put forward more enlightened beliefs on the need for evaluating care issues and clinical interventions. One such person was Juan Luis Vives, born in Valencia in 1492, who wrote extensive commentaries on a wide variety of interventions concerning the mentally ill. Juan Luis Vives became professor of humanities at Louvain in 1519 and produced one of the first notable works on modern psychology in 1538. Although not very well known in England he did put forward a strong belief concerning the treatment of mental distress that we might do well to integrate into society today: “Since there is nothing in the world more excellent than man, nor in man than his mind, particular attention should be given to the welfare of the mind; and it should be considered a highest service if we either restore the minds of others to sanity or keep them sane and rational ... One ought to feel great compassion for so great a disaster to the health of the human mind, and it is of utmost importance that the treatment be such that insanity be not nourished and increased, as may result from mocking, exciting or irritating madmen ...” Nearly one hundred years later after the assiduous work of Vives the author Robert Burton in 1621 published The Anatomy of Melancholy. This book uncovered and echoed the mental bleakness that was to be found in England during this period of time. It referred to a melancholic state that often affected the local population with feelings of inadequacy and a total lack of energy. The term Melancholy has been in use since the 17th century as a collective word for dejection, but in the 20th century was adopted as a clinical term what we would now call depression. Burton’s 17th century book contains a wide description of Melancholy and lists all the kinds, • In 1514 the German painter and engraver Albrect Dürer made his most famous engraving, ‘Melencolia’
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feature causes, symptoms, prognostics and several cures of its malaise. The 1632 edition of the book contains a verse that reflects upon the current mental desolation suffered by men: “But see the Madman rage downright, With furious looks, a ghastly sight, Naked in chains bound doth he lie, And roars amain, he knows not why. Observe him; for as in a glass, Thine angry potraiture it was. His picture keep still in thy presence; ‘Twixt him and thee there’s no difference.” Some 30 years later in 1651 Thomas Hobbes wrote on the ‘state of nature’ an attempt to explain the principal building blocks of human society, its culture and humanitarian approach to liberty and equality. Hobbes wrote during some of the most tumultuous times in early English history that the life of man was far from exultant. Worst of all he believed that all those living in the 17th century endured life in a continual state of fear and dwelt upon the consequence of a pitiless death. Hobbes’ bleak political statement describes the life of man in a period not too well known for its mental health care as being: “solitary, poor, nasty, brutish and short.” Hobbes, disdainful if not cynical view concerning the human race was not a major revelation about cheerfulness but it did reflect some contemporary issues on the state of society’s melancholic mechanisms. The next 300 years are occasionally lit up with various people trying to develop good mental health care but very often society would revert to custodial care and institutional incarceration. Throughout the 19th and 20th centuries many caring models and interventions were created with some being well publicised while others disappeared into the mists of time. For example in the 1930s Edna St. Vincent Millay held the view that the main requisites for the continuing happiness and well-being of the human race were: (i) a job; (ii) at least one meal a day for at least the next week; (iii) an opportunity to visit all the countries of the world, to acquaint yourself with the customs and their culture; (iv) freedom in religion, or freedom from all religions, as you prefer; (v) an assurance that no door is closed to you and that you may climb as high as you can build your personal ladder. That emotional ladder can be seen as one of the fundamental building blocks of the human race. It constantly tries to adjust and cope with various life stressful events and their subsequent and often poignant reactions. Although life has always been full of precarious activities and events we lose our sensitive approach to mental health research matters at our peril. These anxiety provoking events and sometimes fearful activities have made the public aware and some grow in the belief that such life sorrows, sadness and grief have today for many increased beyond human tolerance. These long-lasting 12
forebodings and the alarming and formidable hopelessness that members of the society experience have increased and helped raise some fundamental questions on the debate concerning what are our current approaches to reviewing mental health policy initiatives. In the book Madness of Kings Vivian Green reviews the historical impact of mental illness and states that: “madness seems like a foreign country and its inhabitants aliens, either permanent residents or temporary visitors and as a consequence treated in more recent centuries as social outcasts”.
Present echos That quest for 21st century answers began in January 2005 when the Mental Health Action Plan for Europe headed by the World Health Organisation produced a paper called ‘Facing the Challenges, Building Solutions’ (EUR/04/50478/6: 2005). This report proposed to answer some of the European mental health concerns by attempting to formalise through a list of generic aims and a somewhat impassive discourse on current mental health endeavours. Health Ministers and their representatives attending this conference agreed under the heading ‘Preamble’ a sentence that categorised the Primary Aims of mental health as being to: “enhance people’s well-being and functioning by focusing on their strengths and resources, reinforcing resilience and enhancing protective external factors”. Would these reports and development initiatives help guide and formulate the World Health Organisation policy? The paper’s Preamble, Scope and Actions are all congenial and fulfil via government speak the necessary language that utilises the concept of well-being although we are not told what this really means or how we can measure it. There are three sentences that give us an insight into how very poor this paper is on mental health research. In section eight the readers are told that there is a need to have a comprehensive evidence-based mental health policy but there is no reference to any empirical research evidence to this effect. This extremely disappointing situation was further endorsed (Section 8: sub-section ix), explaining that we should: “design recruitment and education and training programmes to create a sufficient and competent multidisciplinary workforce”. There is very little evidence published that shows us how effective UK education, recruitment and training is and this remains the same in Europe and the rest of the world apart from the pioneering work of a few notable senior academics and even fewer psychiatric nurses. Mental health nursing practice continues to be ardently influenced by tradition, unsystematic trial and error, and spring 2006
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Physicians in the 18th and 19th centuries used crude devices to treat mental illness, none of which offered any real relief. The circulating swing, top left, was used to spin depressed patients at high speed. The tranquilising chair, top right, to calm people with mania. The crib, bottom, was widely used to restrain violent patients
predisposed poor leadership. Bearing in mind that mental health nurses are extremely poor at publishing research articles and know that the need for quality care should be based on the best and most current empirical research many nurses fail to attain this principle of care. Section 8 sub-section xii requires that we should initiate research and support evaluation and dissemination of research papers. Under Section 10 sub-section xviii of ‘Responsibilities’ the last agenda item suggests that we should commission research when and where knowledge or technology is insufficient and disseminate findings. With a poor track record on undertaking and publishing nursing data, our current knowledge and technological know-how is at best inadequate and at worse stuck in the 1950s. Section 13 sub-section (c) we have a research heading that is split into two further subheadings that contain the statement that the authorities should: “establish a network of mental health collaborating centres that offer opportunities for international partnerships, good quality research and the exchange of researchers. Produce and disseminate the best available evidence on good practice, taking into account the ethical aspects of mental health”. This statement is a wish list that hopes that the dissemination of best available evidence on good practice is facilitated via osmotic influences. Research findings must be published in journals that are read by those who can use the evidence; however, the number of psychiatric nursing research journals across the world is extremely poor and psychiatric nurses in clinical practice don’t read these journals in any large numbers. your voice
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Finally under Section 13 sub-section (d: iv) the paper proposes that service development should: “assist with the formulation of research policies and questions”. It is incumbent on policy makers that they look at what theoretical and practical evaluation questions need to be addressed before health care policies are considered. The process of developing evidence-based nursing practice begins with a question about a specific nursing problem or situation; it should not start with developing policies unless there is a hidden agenda. In conjunction with the above paper on the Mental Health Action Plan for Europe the World Health Organisation continued by producing a further action plan section (EUR/04/50478/7: 2005) again called ‘Facing the Challenges, Building Solutions’. After a very long preamble and introduction through various sections we are informed in Section 7 that: “It is essential to acknowledge and support people’s right to receive the most effective treatments and interventions…” Unfortunately, we do not at present have enough research data that could inform us of the most effective treatments and interventions, although we have a list of nursing models that integrate several sciences that include CBT, Psychotherapies, Psychosocial Interventions and medical models. These two papers amount to 18 pages of professional challenges that should be addressed between 2005 and 2010. It is only in Section 12 of paper 2 that the discourse starts on evaluation of research principles that is perversely shown as an end process rather than a beginning point. This Section gives 10 action points and concerns the field of psychiatric nursing. The opening sentence suggests that “considerable progress is being made in research” although they say existing evidence concerning effective good practice is not known to many professionals. This last section reflects the importance of research but fails to create any sense of urgency or even echo our present state of affairs that shows the scientific data is not there or available to instigate good universal mental health practice. If you combine this with no mention of the role or experiences of the non-statutory and voluntary agencies together with an absence of carers’ concerns – failure of the legal system and mental health legislation, financial burdens, drugs, alcohol and vast moral problems concerning stigma – the future of mental health is in dire trouble and the future health patterns don’t make it any easier.
Future echos As life expectancy of most individuals continues to improve, the total number of people experiencing mental health disorders will also increase. Equally and even more unacceptable is that the number of children showing 13
feature mental health problems will also significantly grow. This trend, already critical, will result in major challenges in managing, financing, and delivering treatment services for people who have a mental health problem. From a global perspective the scale of the challenge posed by mental illness is enormous. Current data and information interrelated with contemporary practical issues just show how vast that challenge is. The Diagnostical Statistical Manual (DSM) first used in 1952 contained about 100 pages that referred to a list of about 60 mental disorders. The latest revised edition of the book (DSM-IV 2000) contains about 1000 pages. The next DSM-V is not scheduled for publication until 2011. More people appear to be diagnosed from more psychiatric disorders than ever. In August 2004 the World Health Organisation (WHO) reported that 450 million people worldwide would be affected by mental health problems and the European Conference on mental health (January 2005) reported that one in four Europeans would suffer from a mental illness sometime in their life. Contributing to this sombre situation a vast number of countries are currently devoting less than one per cent of their total health expenditure on specific mental health care. Mental illness including suicide accounts for over
‘Bedlam’, painted in 1735, has sometimes been thought to be a faithful reflection of conditions inside Bethlem, The Hospital of Saint Mary of Bethlehem, a London mental hospital commonly known as Bedlam, which sold admission tickets to the public in the 18th century, becoming a popular tourist attraction. In this picture by English artist William Hogarth, part of his series A Rake’s Progress (1735), two women (seen in the background) tour the hospital, watching the mentally ill patients for their amusement. The hospital became notorious for its miserable conditions and cruel treatment of patients.
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15 per cent of the burden of disease in these countries, that is more than the disease burden caused by all cancers. Depression was ranked second only to worldwide ischaemic heart disease in magnitude of disease burden. The WHO have established a mental health Global Action Programme (GAP) that is trying to focus on partnerships that would enhance nation states to combat social stigma, reduce the financial burden of mental disorders and promote mental health care. GAP reported that disability caused by major depression was found to be equivalent to blindness or paraplegia, whereas active psychosis seen in schizophrenia produces disability equal to quadriplegia. The projections show that with the ageing of the world population and the conquest of infectious diseases, mental illness will increase its share of the total global disease burden by almost half very soon. Major depression is now the leading cause of disability measured by the number of years lived with a disabling condition worldwide among persons age 5 and older. With the United Nations reporting global conflicts increasing five times since the end of World War II the increase of mental distress is quickly becoming our nemesis. Both internal conflicts, and conflicts that cross country borders, result in not only refugee flights but also tremendous increases in the levels of grief, despair and personal anguish. People flee their homelands due to fears of persecution, threats to personal safety and the loss of basic necessities of life. The majority of people worldwide suffering from these types of emotional distress are very often women and children. If you include the very recent tragedies of the East Asian Tsunami and the Asian Earthquake a massive increase in Post Traumatic Disorder will add to the enormous psychological effects these people have encountered. The immense challenge facing all of us in promoting good mental health is passing us by as we sleep walk into a global catastrophe. As Professor Vives witnessed some 500 years earlier: “it should be considered a highest service if we either restore the minds of others to sanity or keep them sane and rational”. When shall we ever learn? “If men could learn from history, what lessons it might teach us!” Coleridge wrote in 1831, “But passion and party blind our eyes and the light which gives us a lantern on the stern which shines only on the waves behind us!” © Paul Shelley - January 2006
spring 2006
your voice
Rethink’s RICHARD LAPPIN talks about what a typical working day holds for him
staff diary
A day in the life of a family support worker
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ention the beautiful north-east coast of Northern Ireland and you will think of the Giant’s Causeway and the home of Bushmills whiskey. It is also the area where Rethink Family Support Worker Richard Lappin works. Read on to discover how he spends a typical day working for Rethink. It is just gone 8:30am and I take my bag to the car, get in and set off to my first port of call, Ballycastle. Ballycastle is approx 30 minutes drive from home, Portstewart, and takes me along part of the North West 200 motorcycle road race circuit to Portrush and along the coast past the picturesque Dunluce Castle and then on to Bushmills, home of the world famous whiskey. From here I head to Ballycastle. My base is an office in the Dalriada Mental Health Resource Centre, part of the Causeway Health and Social Services Trust. The Trust covers a wide rural section of North Antrim and East Londonderry. There is a population of 120,000 in the Trust area, which increases to over 150,000 in summer due to tourism. Just before 09:00am – I do the usual things when I get in: check the answer machine, post and emails and have a coffee. I have a Carers Group meeting in the evening so I ring the manager of the venue we are going to use to make sure all is well. Tonight’s group will be in the Pavestone Centre in Coleraine. There are three Group meetings each month: one in Coleraine; one in Ballycastle; and one in the Glens at Cushendun. As I am based in a building with the Ballycastle Community Mental Health Team1 I am able to liaise with them regarding carers issues and updates. I then call a carer who has left a message enquiring about the service. I tell them what the service has to offer them and arrange a meeting to discuss how I can best support them. This is arranged for early next week. 11:30am Carer Visit – I travel from Ballycastle to Coleraine to visit a carer. Today, we will discuss the process of assisting the person they care for in moving to independent accommodation. Although this is a positive move for service user and the family, it also is a situation which has many feelings, emotions, and uncertainties. I am aware that extra support may be needed. 12:30 Lunch – I get the opportunity for a quick sandwich and a coffee in Coleraine before heading to the Coleraine Volunteer Bureau for a meeting of the Disability Forum. 1:00pm Meeting of Disability Forum – The Coleraine Disability Forum has only recently been set up. There are 24 Voluntary and Statutory groups represented so far. As a committee member I am assisting today to help produce the Aims and Objectives for the organisation in the form of your voice
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a Strategy Document. This process has been overseen by a Management Consultancy Group as part of support from the Local Strategic Partnership in Local Government. The aim is to create a forum that will be proactive in the Coleraine area on disability issues. Currently I am the only representative from a mental health organisation, but hopefully this will change as we identify more potential member organisations in the coming months. 2:00pm ‘Clinic’ at Coleraine Mental Health Resource Centre – Every two weeks I hold a ‘clinic’ in each of the Mental Health Resource Centres in the Causeway Trust Area. Today I am in Coleraine, but I also hold ‘clinics’ in Ballymoney Mental Health Resource Centre and at my base in Ballycastle. Also there will be a ‘clinic’ in the local Psychiatric Unit, the Ross Thompson Unit at Coleraine Area Hospital. These ‘clinics’ are an opportunity for me to meet with the Community Mental Health Teams, but more importantly I am accessible to the carers in these areas. I have developed links with the Rural Transport organisations which can help provide transport to these venues from outlying areas. 5:30pm Dinner – I head home, which is four miles away, to get a bite to eat and get ready for the evening’s group meeting. 7:00pm Carers Group meeting – Each month I facilitate a Carer Group Meeting in three venues. This allows carers the opportunity to meet have a cup of tea or coffee, share experiences and get support from people who have been through similar life events. It can also be an opportunity for a guest speaker to attend and discuss a specific topic. Tonight the Rethink Advocacy and Advice Worker for the area has come along to explain her role and how the service can be of benefit to carers and those they support. This evening two new people attend, who have both been referred to the service recently. I also get a chance to let the group know about updates within Rethink and tonight I ask their opinion on some draft policies which need feedback. I provide copies for them to read and return to me with their comments. This is an important way to keep the carers informed about the developments within the organisation. 9:30pm Group winds up – I lock up the venue and head home to relax after one of the longer days in my calendar. (Footnotes) 1 A multi disciplinary Team made up of Community Psychiatric Nurses, Social Workers and Occupational Therapists. 15
news Rethink Manager receives top sports award
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Rethink Service Manager has been crowned BBC Midlands Disabled Sports Personality of the Year at a prestigious ceremony in Birmingham. Neil Smith, Area Services Manager for Rethink East Midlands, scooped the accolade for his achievements in swimming and was presented with his award at the third annual BBC Midlands Sports Personality 2005 by Midlands Today presenter Nick Owen, during the ceremony at The National Motorcycle Museum, Birmingham on December 4th. Neil, who is part of the City of Birmingham Swimming Club, is based in Leicester and has been with Rethink for fourteen years. The award adds to a growing list of accomplishments for Neil: he returned from the World Cerebral Palsy games held in Connecticut during July with four gold medals and a world record time, scooping the accolades after winning the 200m Individual Medley in record breaking time as well as claiming victory in the 50m, 100m and 200m freestyle. Following his achievements there, he was nominated for the BBC award by the Amateur Swimming Association. The ceremony was attended by stars of the sporting world and amongst those present were Denise Lewis and Ashes cricketer Ashley Giles. Speaking about his success Neil commented, “I am honoured to have been nominated for the BBC Midlands Disabled Personality of the Year and thrilled to have won. I think this award highlights that people of all abilities can achieve sporting success and I would particularly like to thank my
colleagues at Rethink who have supported me in being able to pursue my passion for swimming.” As a result of his accomplishments, • Neil Smith (left) with Nick Owen Neil is down to the last sixteen applicants for a documentary due to be filmed in Africa in January for BBC 2. ‘Beyond Boundaries’ will feature twelve people on a four week journey to cross Namibia by foot, camel and kayak. If successful, Neil hopes to use the experience to raise awareness of mental illness and disability. Additionally, Neil has a number of innovative awareness raising ideas he is considering for 2006 including a channel swim and swimming the UK’s largest three lakes in 24 hours. 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 ability. He stated, “I feel it’s important to encourage people within the sporting world to believe in and follow their dreams.” For more information on the awards visit: http:// www.bbc.co.uk/birmingham/content/articles/2005/ 12/05/sports_awards_winners_2005_feature.shtml
National men’s health week
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ational Men’s Health Week starts on 12 June this year. On Wednesday 14 June, the organisers, Men’s Health Forum, are staging a ground-breaking conference: ‘Mind Your Head: Improving the Mental Wellbeing of Men and Boys’. The conference is very timely, especially because of the new duty on public sector organisations to promote gender equality which becomes law in April 2007. The conference will raise awareness of all the mental health issues that impact on men. It will look at these issues, however, from a positive standpoint, exploring how problems can be tackled through gender-sensitive practice in a wide range of settings and life stages. The aim is to ensure that each delegate goes away with at least one working model for their own practice, inspired by all they have seen and heard.
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The Department of Health is sponsoring this conference, along with The Football Association, which has generously made the new Wembley Stadium available to Men’s Health Forum for the day. (Alternative conference space has been booked in the event that the stadium is not completed in time.) NMHW is of increasing interest to health and social care workers, and around 500 are expected to attend this conference. National Men’s Health Week in the UK is part of a far wider campaign. The theme for Men’s Health Week throughout Europe is also mental wellbeing and other men’s health activities will take place in Australia, Canada and the USA. You can find out more about the conference programme, and register for a place at www.menshealthforum.org.uk spring 2006
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news continued from page 10
Hull carers group co-ordinator steps down
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ne of the founding members of the Hull and District Rethink Carers Group has stepped down after several years as Group Coordinator. Barbara Hilding has decided to take a back seat and join her partner, Ian, in a well deserved retirement. Barbara is well known locally as a passionate advocate for Carers issues and she always does it in her own inimitable style. However, not so well known is her work behind the scenes in supporting Carers under pressure. “I know that many of the Hull group’s members have benefited from her sound advice and her listening ear over the years” said Cally Barker, Manager of Hull and East Yorkshire Rethink Carers Service. “She is always there for people when they are in crisis and she cares deeply about the well-being of the group as a whole.” “On a personal level, I will miss Barbara’s support, her frankness, her warmth and generosity of spirit but of course I’m delighted that she is staying on as a group member,” said Cally. “I would like to say a huge thank you to her for her hard work and commitment to Rethink and this Carers Group. She will be a hard act to follow!”
The Green Paper is being consulted on and Rethink is submitting its own evidence to this. But this campaign is likely to continue for some time to come.
How you can help We need to know about your experiences to convince people in Government of the current problems with the system. So please write and tell us about them. Write to Jane Harris, Senior Campaigns Officer, 5th Floor, Royal London House, 22-25 Finsbury Square, London EC2A 1DX or email campaigns@rethink.org with: • Your experience of Job Centre staff – how much do they know about mental health? Please tell us of your experiences, good or bad. • Your experience of employers – have you or someone you know been affected by stigma? • Your experience of Occupational Health – have you or someone you know been accepted for a job and then not been able to take it up because of occupational health concerns? Thank you all for your help in this campaign.
Stop press...
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aul Farmer Rethink’s Director of Public Affairs will be leaving in April to become the new chief executive of Mind.
• (from left to right) Rosie Winterton – MP, Andrea Nettleton – Operations Officer Hull and East Yorkshire Rethink Carers Service, Barbara Hilding – Co-ordinator Hull and District Rethink Carers Group, and Cliff Prior.
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WE hope to do a more detailed piece in the next edition of Your Voice. Editor
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FRAN SINGER, who has had experience of mental ill health, discusses her hypothesis concerning mental distress
The genealogy of mental health – a hypothesis concerning mental distress How do we dig into the past? Can we become psycho-archaeologists and genetic geologists of our own histories? Is social engineering part of our psychosocial evolution? Are the causes of mental ill health or well being genetic or environmental? Are they a result of social conditioning or cultural inheritance? If our ancestors experience a repeated cycle of events do their reactions become embedded in the genetic memory of later generations? If we have an on-going response to any given situation are we reacting to an inherited family memory? If our ancestors’ traumas were untreated and undiagnosed could stress and anxiety be unconsciously passed from one generation to another? Can patterns of behaviour develop as defensive reactions to distressing situations in one generation and become inherited family characteristics later down the family line? If traumatic memories are repressed can they trigger an automatic psycho-emotional response in future generations? Is there a history gene, which carries the story of the family and forms the basis of our mental ill health or well-being? Does this history gene respond in a certain way when certain events are played out in later generations? Are illnesses, mental and physical, triggered through a history gene? Everyone has a history. Whether we choose to recognise its influence or not – it’s there. It can be present in our lives as a photo, a domestic object, a book, a word, as a piece of furniture, a building – anything that connects our lives in the present to a person, situation or event in the past.
experienced similar influences and sources, or we might remain closed and isolated with a sense that we are the only person holding on to it. History is exclusively ours in a very individual, personal and unique way.
History is about memory Memory can be stored as a physical, psychological, emotional or mental reaction, state or condition. This is why the discoveries of Freud, Jung and their descendants continue to help us understand the connection between the presence of physical, psychological, emotional and mental symptoms and our history and experience of traumatic and disturbing events. A group, a family or a community can remember something collectively and it may become a story or a myth, but individually we may have a very different take on it. Our experience or memory of something can diverge quite dramatically and drastically from a collective consensus. How we react to or interpret memory is our own personal way of understanding and dealing with history and its effect on us. This can and does translate into behaviour, response, reaction or feeling. A remembered experience or lost hidden memory produces complex patterns of response or behaviour. They influence our present lives in ways that are not always transparent, obvious or acceptable. Almost anything can trigger this response mechanism. My own experience of dealing with history and memory has been in therapy. I have explored many incidents, among them my reactions to my parents and relationships within my family. This is probably the most common route that therapy takes, as revealed in the many case histories published over time since Freud began his analyses at the end of the nineteenth century.
Our relationship to that history can evolve slowly over time, usually influencing our core relationships in life, or erupt suddenly and unexpectedly, as a feeling, a reaction or a mood. This has been described as a pattern. Anyone and everyone, whether diagnosed or undiagnosed with a mental health condition, has a personal history originating from a variety of influences, and based on a number of sources.
But for me, therapy did not go back far enough. The more I looked at my parents’ lives the more I wanted to look at their parents’ lives. And then beyond that, their parents’ parents’ lives and so on and so on, back in time. I went back as far as I could in the living memory of my family. This has spanned five generations to the beginning of the 20th.
History, usually and generally, belongs to us individually and collectively. We share its roots with those who have
I have also begun to collect other family profiles across this kind of time frame to see if I can establish evidence
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feature Hypothesis of the history of mental distress – diagram of a process through five generations of a family FIRST GENERATION – A COLLECTIVE FAMILY EXPERIENCE 1906 First Russian Revolution – a failed uprising against Tsar by various left-wing groupings including Marxists, Communists, Social Revolutionaries and Anarchists.
Loss, rejection, separation. persecution, paranoia, fear, anxiety and depression
Family flees persecution from the cossacks, in particular, and arrives in the East End of London.
SECOND GENERATION – REPEATED TRAUMAS: PERSONAL AND COLLECTIVE Teenage girl experiences death of her terminally ill mother alone in South France. Father re-marries within 6 months to a much younger woman. Girl not allowed to marry her true love – the brother of the new wife. seen as incest in orthodox law.
1920s - an arranged marriage between two young people who love other people and who both want to marry someone else. Husband takes the dowry and then goes away to study. Wife doesn’t know how babies are born – she believes through the navel
Loss, rejection, separation. persecution, paranoia, fear, anxiety and depression – repeated and reinforced. Violence, arguments, addiction, manifestation of manic depressive symptoms, addictive haits form in both parents: abuse of alcohol and nicotine. NO DIAGNOSIS
During the Cold War, a National Press scandal involves her children named in Communist activities and peace protests. Holocaust details emerge. Family scandal as wife remarries ‘out’ of the orthodox community. Woman now socially ostracised by her family and community
World war 2 begins. Family separates. Mother and children move away from London to avoid bombs. Father left behind falls in love with another. Marriage fails, frequent rows. Mother plans to send children to USA as Nazi invasion looks likely but ship in front gets sunk by a U-boat.
THIRD GENERATION – SYMPTOMS RE-MANIFEST: PERSONAL Children manifest addictive symptoms, have health problems at birth and later, suffer allergies. Their marriage partners have various social problems and addictions. All are clever, but rebellious and victimised; under achieve and never reach their full potential. Low self esteem.
Failed or abusive marriages, addiction to alcohol and drugs; various abuses within relationships. Holocaust explained and discussed.
Loss, rejection, separation. persecution, paranoia, fear, anxiety and depression DENIAL
FOURTH GENERATION – SYMPTOMS PERSIST, DENIAL CONTINUES, ISSUES ADDRESSED LATER Children have problematic relationships. All are academically successful but under achieve personally and professionally. Low self esteem.
Outcomes include joining a religious cult; first diagnosis of manic depressive psychosis in family.
Abuse, addiction, depression, separation anxiety, mania, eating disorders. First use of therapy – individual and family
FIFTH GENERATION – SYMPTOMS PERSIST – ISSUES ADDRESSED
High achievers addressing family issues, open to discussion therapy.
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Commitment to psychic problem solving, active use of spiritual and holistic practices, awareness and use of healing dimension.
Physical and emotional health symptoms include eating and mood disorders. Extreme psychosis triggered by drug abuse. Acceptance of and openness to healing process including spiritual and psychic energy and insight.
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feature of complex patterns of response or behaviour to history or to memory that have resulted in mental health issues in later generations.
bi-polar affective disorder a hundred years later, manifested as psychosis triggered by a massive hormonal imbalance after birth.
I dig into the past and look at things rather like an archaeologist might explore a buried site or a geologist might scrutinise a piece of rock. This has led me to draw psychological and emotional history trees where I have recorded diverse events through the generations.
Intrigued by these personal histories I looked more closely at mine and others’ psycho-emotional biographies and began to draw psycho-emotional family trees, charting family history lifelines.
Personal histories I’ll give you an example of one family, for instance, where, in the paternal line, an ancestor’s extreme anxiety about Jack the Ripper’s activities triggered a move from Edgware to the Midlands; and in the maternal line the Tsar of Russia’s pogroms resulted in ancestors’ fleeing from Russia to London in 1906. Then during the First World War – bereavement, shell shock, severe physical ill health resulting in a fatal illness. Down that family line, three generations later, mental health issues began to emerge in the form of depression, paranoia and delusive thinking. My hypothesis proposes that the origins of mental and emotional distress can be traced back at least five generations. As in the case above, events took place at the end of the nineteenth century in Russia, Lincolnshire and the South of France. These are the furthest traceable traumatic events. There was a mental health diagnosis of
Professor Dorothy Rowe has written extensively on the subject of depression. She promotes the process of narrative therapy in which by telling our own story we validate our experiences and ourselves. We are constantly attempting to understand our own place in history and our pathway through our life. Our reaction to history can illuminate many clues to the puzzling web of psychosocial behaviour. I am interested to hear from other readers who are interested in this way about their family histories. I have begun collecting anecdotal evidence in the hope that it may become a more formal piece of research. All material would remain the copyright of the author and be anonymous and confidential in line with the strict guidelines on ethics and code of practice respected by the psychoanalytic profession. Fran Singer info@self-centre.com
Acute Psychiatric Ward Accreditation System (APWAS) – Carer Representative Required for Steering Group
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he Royal College of Psychiatrists’ Research and Training Unit is developing a system for accrediting acute psychiatric wards. The system will be standardsbased, will include both self-review and peer-review, and will be developmental, in that it will be applied in a way that supports ongoing service improvement. In order to ensure that APWAS has the widest relevance and support possible, we are seeking a Carer Representative to join our Steering Group. This representative will play a key role in the development of the APWAS programme, and will be required to attend meetings at the Royal College of Psychiatrists’
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Research and Training Unit in London approximately four times a year. Non-salaried members of the Steering Group receive payment for their time. If you are interested in joining this exciting new project, please contact us for a nomination form: APWAS – The Royal College of Psychiatrists’ Research and Training Unit, 4th Floor, Standon House, 21 Mansell Street, London E1 8AA For more information, please visit our website: http://www.rcpsych.ac.uk/cru/ or call Mark Beavon on 020 7977 6647.
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feature John Madden Interview Below is an interview with British Director John Madden, who has previously directed Captain Corelli’s Mandolin, Shakespeare in Love and Mrs Brown about his new film, Proof. Proof is a compelling story which stars Anthony Hopkins as a mathematical genius who battled schizophrenia before his death and his daughter Catherine’s (played by Gwyneth Paltrow) struggle to negotiate her Father’s past and her increasingly uncertain future; how much of her Father’s instability – or genius – will she inherit? Proof was released on February 24th 2006. Key: JM – John Madden AH – Alita Howe
AH – Thank you for talking to Rethink; I know you must be very busy promoting the film. JM – I’m terribly happy to be doing this interview and happy if the film throws any light on the kind of experience and issues that you’re dealing with at Rethink. AH – So could you tell me about the film from your perspective? JM – The film is essentially the story of a relationship between a father and daughter. The father is the character who’s played by Anthony Hopkins and he is an extravagantly gifted mathematician who has made, earlier in his life, some spectacular advances in mathematical thought which have revolutionised the field. But, through the course of the film, we learn that very early on in his life he was subject to episodes of instability; schizophrenic episodes I suppose, although that word is never used in the story. Now a teacher at a university, he increasingly becomes unable to sustain his career. The point at which the story commences is the immediate aftermath of his death. His wife passed away some time ago and is not really talked about in the film but he has two daughters; the elder one has run away from the circumstances and has never had a really close relationship with her father but has justified this behaviour by becoming the provider for the family. And the younger daughter, who is really the focus of the whole story, Catherine, who is played by Gwyneth Paltrow, has an intensely close relationship with the father. She has a mathematical gift herself which the father has fostered and which has tended to exclude the elder sister. Catherine has taken sole care of the father from her midteens and has really sacrificed her own life completely to take care of him and particularly to maintain the illusion that he is doing meaningful work because he lives for, and loves, his work.
• Director John Madden your voice
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Although you see some extreme behaviour in the film, we didn’t dwell on episodes of psychosis because we wanted to focus the story on the daughter’s sense that she may be descending into the kind of illness that’s engulfed her father. She has lost a sense of her own boundaries and she really doesn’t know any more where she ends and he begins. So really the subject matter of the film is her notion and her obsession really, as to whether she might be experiencing the same illness as her father. 21
feature The other part of the film concerns with the relationship between Catherine and a graduate student played by Jake Gyllenhall who worships the father and is convinced that he must have left behind some significant work. Catherine is unconvinced and maintains that he was too ill to have done anything of importance in the last fifteen or twenty years of his life. The story concerns the discovery of a piece of work, a ‘proof’ which becomes the central issue.
AH – So, did any of the actors do any research into mental illness or carers for the film? JM – Again, not in any great depth, and it makes us sound as if we were dabbling in mental illness and we weren’t but I think there is a philosophy to which I
We didn’t dwell on, in any kind of clinical detail, the exact nature of the father’s illness but what the film does is dramatise and demonstrate the extraordinary closeness between the father and the daughter; the mental strain that the daughter experiences as a result of trying to maintain the father’s equilibrium and I hope it’s helpful and moving for people who have to go through or have gone through some of the experiences because I think it’s written with great accuracy and truth and hopefully played with the same. So, I think the film has a lot to offer. AH – Did you do any research with anyone with a mental illness before you were involved in the film? JM – I have had experience of those kinds of problems and I’ve certainly been around people that have experienced bi-polar disorder. However, we didn’t do an enormous amount of research into that area because we felt the film itself really doesn’t focus on the nature of the mental illness. I suppose that just as the mathematics in the story is an off-screen presence; so the mental illness in the film is an off-screen presence. Therefore, whilst it’s something that entirely informs the behaviour of the characters in the film, it’s never really visually seen and as such we didn’t want to get caught up in a clinical reality. AH – As the character of Catherine is portrayed as a carer in the film what are your views on the carers and caring? JM – Yes, that is the focus of the piece and it’s a role that I have enormous admiration and sympathy for because I think carers famously are the forgotten people and I think that to experience a loss like Catherine, must be an unimaginable pain. I’ve been a carer myself; my mother died when I was very young; not from mental health problems but she certainly suffered from profound phobias which I remember very clearly and which made a very strong impression on me. Caring and carers is the subject of this story and I can’t imagine somebody watching the film and not being able to understand the pain and anxiety which grips Catherine throughout her father’s illness and after his death. I think that hopefully a profound sense of the love Catherine had for her father, as well as the pain she had to endure in negotiating the extremes of his illness, comes shining through. 22
• Gwyneth Paltrow and Anthony Hopkins in the new film ‘Proof’
partially subscribe to in that some actors simply want to draw on their own experiences in terms of the material the piece presents. We did do some reading and some research but had we been doing a detailed study of mental illness and schizophrenia then we would have approached it entirely differently. Anthony Hopkins is famously averse to intensive research and reading into a subject. However, his experience of mental illness, through acquaintances of his, unquestionably informed some of his behaviour in the film. AH – At Rethink we do a lot of work into the stigma surrounding mental illness; do you think that this is something that exists in society and the media? JM – I absolutely think it does and one area that occurs to me is the very first thing I directed was a play about a woman who suffered a stroke. I did an enormous amount of research into associative brain dysfunctions for the project and one thing I remember vividly was that people who had suffered strokes and resultantly presented unusual behaviour, were often fighting the perception that they were ‘nuts’ or ‘crazy.’ And I think it’s true that people do tend to run a mile from such behaviour because they don’t know how to deal with it, they don’t recognise it and they’re frightened of it. So I think stigmatisation is a very serious problem and particularly with mental illnesses; and to some extent that is part of what is explored in the film; the fear of what being stigmatised actually means. spring 2006
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feature AH – Do you think that the media are in some way responsible, through their coverage of mental health, for furthering the stigma surrounding mental illness?
AH – Going back to Proof, did your perception of mental illness, schizophrenia and carers change throughout your journey of making the film?
JM – I think that certainly some of the coverage of mental illness that I’ve seen has tended to be of a more serious and sympathetic nature and has often illuminated something that one doesn’t necessarily know a lot about. I think that the media could be a source of great information and illumination about a topic such as mental illness and that broadcasters do and should point people towards organisations such as Rethink so that further information can be gleaned and further discussion can be had which I think is quite crucial. But unquestionably, stigma does still exist. In my own family for example, my Grandfather was one of nine children and the ninth child was in a mental asylum from her teens I believe, and was never really spoken about. And although that was in the Victorian era; I think the issue of stigma and old fashioned notions of asylums is still a huge problem to be countered.
JM – I think it did in human terms, yes, because it’s obviously my job to imagine myself, and help the actors imagine themselves, into the circumstances the story deals with. I can’t ask anybody else to empathise with Catherine’s situation if I don’t understand it myself and so I made it my job and Gwyneth Paltrow made it her job to understand what the character is going through. And because I think that David Auburn, the writer, has written something very true, I think it does strike a lot of chords with people who may or may not be in similar situations but certainly can imagine being in those situations. So yes, it has changed me; the whole idea is to empathise and to imagine yourself into a situation because that’s crucial. I think to bring about a better understanding of mental health issues you have to encourage people to use their imagination and I hope that is what this film will encourage people to do.
Schizophrenia trial of Aripiprazole
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new study suggests that the most newlyavailable atypical antipsychotic might be a better choice than other atypicals if current medication is failing to control symptoms or is producing intolerable side-effects. The STAR (Schizophrenia Trial of Aripiprazole) study looked at what happened to symptoms and side effects when 555 people with schizophrenia on medication that was failing to control symptoms or giving tolerability problems switched to either aripiprazole (Abilify®) or another previously unprescribed atypical antipsychotic. After 26 weeks of treatment, those switched to 10-30mg aripiprazole lost an average 1.3kg of weight, while those in the group treated with either 5-20mg/day olanzapine, 100-800mg/day quetiapine or 2-8mg/day risperidone gained an average of 2.1kg. Those in the aripiprazole group also had better improvements in risk factors for cardiovascular disease, diabetes and the metabolic syndrome. After 26 weeks, cholesterol and triglyceride levels fell more in the aripiprazole group than in the group treated with other atypicals. Study leaders said the changes in these risk factors represented a 2-3% reduced risk of developing
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coronary heart disease and a 2-3% reduced risk of developing diabetes for those on aripiprazole compared to those on the other atypicals. Professor Robert Kerwin from the Institute of Psychiatry at the Maudsley Hospital in London said: “Metabolic syndrome contributes to the risk of diabetes and cardiovascular disease. Many people with schizophrenia already have risk factors such as smoking for these diseases and so it is important to have a medicine available such as aripiprazole that is effective, yet may not exacerbate metabolic risk, so that people with schizophrenia can maintain reasonable function and quality of life.” The study also looked at patient preference and measures of the effectiveness of the atypicals studied. Based on a patient preference of medication scale, 47% of those on aripiprazole rated their medication as being “much better” than their prior medication. In those on the other atypicals studied, only 28% said they rated their new medication as “much better”. Those on aripiprazole scored their medication higher than those on the other atypicals based on a questionnaire looking at symptoms, somnolence (sleepiness), weight gain, prolactin elevation, akathisia, EPS, cognition, energy and mood.
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campaigns New pilot scheme aimed to raise awareness
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he Rethink Anti-discrimination Site pilot ran for the whole month of March and set out to show that highprofile, public-facing activity is effective in combating mental health discrimination. The campaign was focussed in Norwich and included:
• Paid for advertising on buses, bus stands and radio, plus a single newspaper advert. • Fundraising asks posted through thousands of letter boxes, supported face-to-face activity on the streets and online opportunities to donate. • Media support, targeting local print and broadcast outlets • Public activity, stalls, book signings and GP visits, supported by a website. • Sophisticated evaluation involving lots of interviews with people in Norwich. The campaign was not a mental health promotion exercise aimed at raising awareness of personal mental health issues, but an anti-discrimination campaign aimed at raising awareness of how these issues affect people with severe mental illness and changing public attitudes. It brought together members, people using our services and staff from across the region and nationally who provided a fantastic energy and presence on the ground.
We certainly raised the profile of the campaign with the unveiling of a statue of former Prime Minister Winston Churchill, who achieved all that he did while battling against manic depression. We put him in a straitjacket to show how the “straitjacket of discrimination” holds back hundreds of thousands of people from achieving their full potential. It proved controversial – and the evaluation will be looking at the positive and negative impact it had. The Norwich campaign is a pilot for an even bigger piece of work we will be doing in Northern Ireland in January 2007. We will use what we learn from evaluating Norwich campaign to build up our knowledge about what works in breaking down stigma. This information will form the basis for an ongoing campaign challenging central government to provide a fully funded, high profile national anti-discrimination campaign. Campaigns exist in other areas such as anti-smoking, heart disease and cancer. Mental health campaigns of this kind have proven highly successful in other countries such as Scotland and New Zealand – we want to build up the case for demanding one for England. Norwich was chosen as a pilot area for our campaign because it has a strong local identity, it is geographically discrete and it has a healthy media presence. Norwich has more anti-depressants prescribed per head of population than anywhere else in Central or Eastern England – 30% above the national average. It also has the unenviable position of having high rates of self-harm and having a higher than a national average suicide rate. Norwich needed the campaign and we need to make the very best use of the new contacts we have made there, as well as learn the lessons for the future. The full evaluation of the Norwich campaign should be ready by the end of May and will be made widely available. If you want to find out more, visit www.rethink.org
• Members of the Norwich campaign team
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group profile Clydesdale focus group
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service user led approach to finding out about people’s experiences of mental health services. This article is a collaborative venture between members of the Clydesdale Centre focus group and a researcher from Keele University. It describes the work carried out over a twelve-month period by the members of the focus group. The Clydesdale Mental Health Resource Centre has been the group’s focal point for a piece of work that aimed to bring about improvements in mental health services by listening to service users and acting on their feedback. The Clydesdale Centre is a community Mental Health Resource Centre in Newcastle-under-Lyme, Staffordshire. It provides services to adults living in Newcastle-underLyme and Stoke-on-Trent, and offers respite, crisis prevention, and treatment of mental health problems. A key aim is helping people remain in their own homes and sustain their normal roles in life whilst developing the means to cope with their difficulties.
information about condition/diagnosis, access to services, and access to housing and support – through to more theoretical questions such as whether the service was doing enough to reduce stigma about mental health. Respondents were given a choice of three tick boxes: “Yes”, “No”, and “Don’t know”. Some respondents added a fourth response, which was “N/A”. A space was available for comments. Support to service users to complete the questionnaire was offered by one of the members of the group. 760 questionnaires were sent out and a total of 290 (38%) were returned. Three key messages from the survey were: • The extent to which service users understood and felt enabled by central aspects of services; • Service users’ access to appropriate information; • Levels of support from services.
At a clinical governance staff team away day in 2003 a suggestion was made to encourage the setting up of a service user focus group. The hope was that this could be a vehicle for service users to express their views about local mental health services. A focus group was established in April 2004 with a core membership of six service users plus two members of staff. The focus group meets monthly and discusses issues relevant to service user care at Clydesdale. One of the first pieces of work done by the group was developing a survey that was sent out to all service users of the Clydesdale Centre.
“We all knew each other, so it made it easier to settle into the group. It was explained what the focus group was about and how the idea came about. Then we were asked what areas we thought needed to be looked at from talking to other service users before, and in general conversation amongst ourselves. So we started to reel things off. It was surprising what we came up with… Some things we came up with at the first meeting were - crisis support procedure to be outlined; appointment times to be lengthened; awareness of alternative therapies.” (Lisa, a member of the focus group) After a great deal of work drafting questions and checking for clarity, a total of 18 questions were agreed on. The questions covered areas from access to your voice
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It is clear that there are some messages for the Clydesdale Centre in relation to the key worker system: only 43% of respondents knew who their key worker was, and only 9% knew who would cover in the absence of a key worker. 71% said they were not aware of how to change their consultant/key worker. Whether service users have enough information – and their experiences about this – was another area that was highlighted. Specific comments indicated that service users felt uninformed in relation to medication and diagnosis, and fewer than half – 44% – claimed they had been given information about their diagnosis. It might be expected that these two aspects – having information about one’s diagnosis and understanding one’s diagnosis – would be closely related. However, this was not the case: two thirds (66%) of respondents said they did have an understanding of their diagnosis. This discrepancy might be explained in other ways. For example: service users finding out themselves about their diagnosis rather than from health professionals. Respondents gave conflicting responses about the support that services provided. On the one hand a number of positive comments were made about the support received from staff at the Clydesdale Centre. This included comments about doctors, the crisis team, and staff in the Centre. However, respondents also commented that practical, non-medical support was often missing. This included a lack of help in filling in forms, and insufficient support when changing to a 25
information different area and having to see a different health professional.
What to expect from GPs
Another practical concern was respondents’ view on housing options available to them. Only 33% said they thought there were adequate housing options for them, 16% said housing options were not adequate, and 34% said they didn’t know.
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North Staffordshire has a wellestablished Voluntary Sector with a good spread of organisations that support mental health service users. Whilst statutory mental health professionals may be a first point of contact for individuals in crisis, it may be that more work could be done to link service users into some of the practical support available from the Voluntary Sector. Given the high response rate to the survey and the useful commentary and feedback it has provided, it would seem that a service user led survey is a powerful approach for identifying issues. The challenge for Clydesdale Centre’s staff and service users will be to act on the feedback that has been given and bring about visible improvements for service users. The Clydesdale Centre is due to close within the next 12 months. Group members are very concerned about the closure and its implications for all users of this service. This article was written by Sue Molesworth from the Clinical Effectiveness Support Unit at Keele University, in conjunction with members of the Clydesdale Centre Focus Group. The Clydesdale Centre Focus Group would be happy to receive responses, comments or feedback in relation to this article, particularly from groups doing similar work. Please email to: Clydesdalefocusgroup@ northstaffs.nhs.uk 26
he GP contract has recently been reviewed, which has led to mental health becoming far more prominent. Rethink submitted evidence to the review panel and two of the three issues we mentioned have now been addressed in the new contract. This is a great success. This article will explain what you can expect from your GP now the new contract is in place. GPs do not have to provide many of the services in the new contract – but most do because they are paid more to do so. There are two services specifically for people with severe mental illness:
Service 1: An annual healthcheck People with severe mental illness should be invited to the surgery every 15 months for a healthcheck. This should include a check of physical health – e.g. screening for diabetes and a blood pressure check. Following Rethink’s recommendation, this will now include more health promotional activities – e.g. cholesterol and obesity check, provision of information or referral to services regarding diet, exercise, drug and alcohol use and smoking. This is very important as people with severe mental illness currently die 10 years younger than others because of physical health problems. Yet this group are offered less health promotional advice. People with severe mental illness have high rates of smoking and are more likely to experience smokingrelating disorders than other smokers. We need real action to stop this. In order for people to receive this health check, they must sign up to be on a practice register. This is not a scary prospect – registers just exist to make it easier for practices to organise their records. They exist for other health conditions like diabetes, epilepsy and asthma. Rethink pointed out to the panel that some people may not agree to go on a register because they are fearful of what this might mean. The new contract means that GPs will get paid for making contact with people who do not attend health checks. This is an important step forward.
Service 2: Keeping a care plan People with severe mental illness should have a care plan in their records that explains their health needs, how they are to be met and what should be done in a crisis. This should include people’s wishes about medication, what they consider ‘early warning signs’ and how they wish to be treated in a crisis. It should also include the views of relatives and carers, if appropriate. This plan should be reviewed in the regular healthcheck. There are also new processes for treating people who are newly diagnosed with depression – GPs must now use an agreed tool if they are to receive extra money for these consultations. The measures for lithium monitoring are the same as before. All this adds up to a much better deal for people with severe mental illness. Do remember that it’s not just the GP contract that can help you get the treatment you deserve in primary care. The Disability Discrimination Act applies to people with mental illness and says that public services like GPs must make a ‘reasonable adjustment’ to allow people to use their services. This might mean granting a longer appointment or not requiring you to sit in a crowded waiting room for a long period. If there’s an adjustment that you need, tell your GP about it. It’s your legal right. spring 2006
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news Rethink launches overseas challenges National men’s verseas challenges have been introduced this year 18 - 26 August 2006: Iceland Trek Oas a new way of fundraising and raising awareness With its striking mix of wild volcanic landscape dotted week for Rethink. You can take part in some of the most withhealth streaming lava fields, icecaps, glaciers, waterfalls, adventurous trips available in far-reaching corners of the world – and what’s more you don’t need ANY previous experience.
bubbling hot springs and geysers, the stunning Icelandic landscape is one you will never forget. 4 - 13 Oct 2006: Peru Trek Follow in the steps of the ancient Incas as you trek to the lost city of Macchu Picchu. Cycling With our cycle rides bikes are provided, although you can bring your own if you prefer. All our trips are accompanied by qualified mechanics with a full range of spares. 30 Aug - 3 Sept 2006: London to Paris Cycle Connect two of the world’s most chic capital cities as you embark on the challenge of a lifetime for charity. 29 Oct - 10 Nov 2006: Vietnam Cycle Discover this hidden land of bright green paddy fields, rugged mountains and white sandy beaches.
Trekking Whether you’re in the deserts of the Sahara or the wilderness of Iceland our local guides will be on hand to make sure you get the most out of your trip.
If you are interested in taking part in an overseas challenge to raise money for Rethink, please contact the community fundraising department on 0208 547 9202 or communityfundraising@rethink.org
MBE awarded to group member
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ethink would like to offer its congratulations to Regional Reference Group Member (North West), Lily Reid, who has been honoured by the Queen in the New Years Honours List. Lily has been awarded the MBE for her ‘services to the community’. For over the last thirty years Lily has been running carers and users groups in the Bury area of Lancashire. Regional Manager Grainne Currie presented Lily with a bouquet of flowers congratulating her on her years of dedication and commitment. Lily plans to travel to London in May to collect her award from Buckingham Palace.
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obituary
KASHEEN THOMPSON was one of the early pioneers of the National Schizophrenia Fellowship which was to become Rethink. Kasheen’s son, the Rev David Thompson, who was also very much an early activist talks about the crucial role his mother played in helping to develop the organisation.
Mrs Kasheen Thompson Jacqueline’s concern about John, and could see her steely resolve, and her determination that she would back this courageous man and his wife come hell or high water. I still have her papers for the meeting with her bold, illegible and confident notes and comments, including the resolution to make a donation of £10 per head for administration costs.
The Early Years, the NSF, published in 2002 gives some account of the role played by Kasheen Thompson in the conception and birth of the NSF in 1970-72. It was a behind the scenes role, because this was her way; but a glimpse of the support she gave to John Pringle, and the support she gave over many years to the NSF, is to be seen in correspondence from 1970 to 1979. She was an enthusiastic respondent to The Times’ article of May 1970, and in spite of her own difficulties gave John Pringle unwavering support from the outset. It was on May 21st 1970 that John Pringle wrote to Kasheen to say that he felt sufficiently encouraged to call a small private meeting. This was held in the Wellcome Foundation on July 25th that year. I remember her awareness and sensitivity that day to John Pringle’s anxiety about the meeting, and 28
Kasheen immediately embarked on some intensive letter writing and gained encouraging responses from various people including Church leaders whom she had volunteered to approach, such as Donald Coggan, Archbishop of York, Basil Guy, Bishop of Gloucester, and fan Ramsay Bishop of Durham. Meanwhile on a more personal level Jacqueline Pringle wrote to her in August1970: “My own feeling is that just talking with new parents in like case or letting them talk to you – is perhaps the most useful thing we mothers could do”. The mutual support given at this time was critical for both families. Both saw that the local group needed to be complemented by a national effort. For this reason on October 1970, at the request of John Pringle, Kasheen responded to the invitation to attend a meeting of Mrs Baker and her new group in Bath. Typically Kasheen ducked an invitation to become the new chairman. My mother backed John Pringle’s vision of a national body with local branches. Her solid support is disclosed in a letter from John Pringle written on May 14th 1971. John wrote to my mother and said “ I remember the Fortitude in your voice when you told me about having to go into hospital last December. And a few lines further on:
“I have by no means given up the hope of getting this venture going, but one must face it – that the obstacles are very formidable”. This was the year described by David Morphet in The Early Years as a low point. But on November 1st 1972 John wrote to Kasheen to say: “I am sure that you are glad that we have got going at last. It has been a long struggle against many difficulties, and without the generous stimulus and encouragement of the original group, which met in London in 1970 to spur me on, I don’t think I could have kept going through these two difficult years. Thanks for everything”. John wrote another long letter on December 1st 1972. For the first time it is on note paper headed: THE SCHIZOPHRENIA FELLOWSHIP. It begins: “I have been awaiting hearing from you with some anxiety, of all the original group you and your family have been most in our thoughts. I don’t know why this should be so except that you have been carrying as great burdens as anyone known to us and showing great courage”. The last letter from John was on February 16th 1979. She had written to him to congratulate him on the OBE. He replied: “You and Mr Thompson were among the ‘first of the few’ as I shall always remember, and now your son David is deeply involved in NSF affairs....” Kasheen continued to be linked with the NSF and was a ferocious behind-the-scenes recruiter. She introduced a number of key players to the Fellowship – amongst the most significant being Philip Wilmot (Chair NSF and Chair World Schizophrenia Society) whom she spring 2006
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news spotted and encouraged at once – before he was actively involved with the NSF. On the twenty-first anniversary of the NSF she was invited to cut the cake at the celebration. By this time she had experienced many years supporting my father who had had a serious breakdown in his early twenties, her son, whose condition caused her to respond to John Pringle’s article, and her beloved grandson who has struggled with schizoaffective disorder for the best part of twenty years. In addition she had looked after my father‘s elderly parents in her own small home from
the age of twenty-one just after her first child was born, and her own mother whom she looked after in the family home for the best part of thirty years. I think she may aptly be called a “caring relative”. Her attitude: “Do not think what your family can do for you, but what you can do for your family.” She continued to retain a lively interest in Rethink until the end of her long life, and was in touch with the Cambridge group within the last few years. Kasheen has three sons, Patrick, David and Michael, who survive her.
All three are members and supporters of Rethink. We are amazed and overjoyed by how far Rethink has travelled. It is beyond our wildest dreams. In her last decade Kasheen was finally free from family responsibilities, and enjoyed life in Holt in her little flat surrounded by Woodlands, and kept abreast of world affairs through a thorough perusal of The Times. She died at High Kelling in the early hours of February 4th fortified by the words of Julian of Norwich “All manner of things shall be well”. David Thompson
Recruiting for Rethink
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here would you go if you wanted to find 50 people interested in volunteering for Rethink? Or where could you sign up over 40 new Rethink members in one day? A shopping centre? A GP’s surgery? What about a university campus?
voluntary sector. Rethink was represented by Colin McAlister (Communications Team Leader), Rosemary McKeever (Volunteer and QUB student) and Maria Callan (Volunteer and NI Management Committee member).
Rethink in Northern Ireland attended a student ‘Work Experience and Volunteer Fair’ at Queen’s University in Belfast on Wednesday 23rd February 2006 and that is what happened! 50 people completed volunteer enquiry forms and 46 people signed up there and then to become members of Rethink.
The fair attracted students who wanted to broaden their knowledge and add valuable experience to their CVs. Those who visited the Rethink stand were eager to know more about mental • Maria Callan and Rosemary McKeever health and the outstanding work Rethink does. Many were keen to investigate volunteering with Rethink. including everyone took every opportunity to encourage people Many of the students who visited the to join Rethink and work with us Rethink stand were psychology to improve the quality of life of students and Rosemary, a everyone affected by mental illpsychology student herself, health. At the end of a hectic but explained the many benefits Rethink fun day we had raised the profile membership brought to those of Rethink and added many new considering such a career path. members and volunteers. Well Maria with her enthusiasm for done to the team!!
Rethink Northern Ireland set up an exhibition stand at the event which was attended by students from all the faculties and schools ranging from psychology to aeronautical engineering to medicine. Over 50 organisations took exhibition space including many from the
your voice
spring 2006
29
book review
MARY NAPIER reviews Michelle Cann’s most recent book
Depressed, paranoid, schizophrenic, maniac: a sane person’s experience with mental illness BY MICHELLE CANN
M
ichelle Cann has written a very powerful book. The fact that it is all true makes it exceptionally important. Michelle chronicles her own story of battling a mental illness that infiltrated her mind, manipulated her thoughts and rendered her world unrecognisable. It also tested her faith in God and human nature. Michelle starts the book by decribing her wonderful childhood and adult years. Her life was full of music, holidays, swimming, games with two loving parents and her brother. It was the beginning of a very meaningful spiritual walk, and although she would later drift away from God for a short while, it is her faith in God that is all inspiring. She was successful at Academia as well as at sport particularly swimming, which gave her a life-long interest in exercise, fitness and good nutrition. She qualified with a Bachelor of Arts degree, followed by a Law degree. She then took up a position with the Bermuda Government in the Attorney-General’s Chambers. After five years there she joined a private firm for three years. Although she was successful in both jobs, there were signs that some sort of illness was appearing. She describes how she began to feel that people were hostile to her and gossiping about her. Several weeks after she left her last job, she felt the line between reality and fantsy gradually began to waver and blur; she had no idea that her grasp on reality was slipping. During the early days of hospitalisation, she had some disordered thoughts that were totally different from any that she had before entering hospital, preoccupied with the idea that her family belonged to some sort of a religious cult, and that the reason why she was in the hospital was for deprogramming. She also began to question certain indisputable facts; for example, that her family of origin was her true biological family! After this first illness she changed career and moved a completely new direction – Mortuary Science, which would allow her to become the fourth generation of her family to manage their Funeral Business. All went well at the family business for a couple of months, but she had another relapse. During her mania this time she wrote her psychiatrist a letter which started off saying she was diagnosed with schizophrenia in 2002. She then went on to say that she has since realised that mental illness “is nothing more than the mind’s way of protecting itself from overwhelming pain”. The letter 30
continued to say “unfortunately my particular situation may involve such things as incest, attempted murder, tremendous emotional maniplation and severe social isolation “She then created a test for her abuser to take and attached it to the letter. She realised later on that what she wrote in the letter was not true. This sort of paranoia can be very disturbing to relatives and carers , as they are often blamed by therapists who take them to be the cause of the problem. Sadly there still remains a few people working in Mental Health, who when they hear this sort of talk, immediately think there is some truth in what the client says. Due to the very different presentation of symptoms in her second manic episode, she was re-diagnosed as being manic depressive as opposed to schizophrenic,and then again she was finally diagnosed as bi-polar. One of the things that the author found most helpful during her illness was to write down her thoughts, as she was descending from the mania. Aside from creating a partial record of her thoughts she could refer to later, it had the same effect on her as organising her physical possessions in her hospital bedroom. It allowed her to gradually regain order and reason in her mind as the medication took effect. The feeling of having some control over the disease process gave her a great deal of comfort because her writing materials were available whenever she needed them. Her recovery from her second episode was over all much faster and more painless that the recovery from her first episode. This book will leave you gasping at times because of its sheer honesty. We should all be grateful to Michelle for sharing such an interesting book with us. She is content now to serve a God who has promised to restore the years that have been stolen from her, and she feels there is no reason to waste an ounce of energy on regret. So I end this review on those powerful words, and would encourage all users to do the same. Depressed, paranoid, schizophrenic, maniac: a sane person’s experience with mental illness by MIichelle Cann Published by Trafford Publishing (ISBN 1-4120-6845-2) Available online at www.trafford.com/05-1756 spring 2006
your voice
viewpoint
events
Victory as Churchill statue is torn down Daily Express Tuesday March 14 2006
D
ear Editor I am not offended by this statue but I am offended by what I have seen reported in the press. I found nothing degrading in the photograph and I still see Sir Winston Churchill as the great man he is. It seems to me that this statue was created to draw attention to the fact he suffered from this illness. Not to demean him, but to remind people we are all human beings, who can suffer from it. It seems to me he stands unbowed even in straight jacket, and looks out on the world with the strength and courage we remember him for. Are we somehow to believe that the appreciation of him as a sufferer of depressive illness lessens him? If drawing attention to, or acknowledging, his illness causes us to view this great man as reduced (and only such reduction could cause us to view this as degradation) how low must we consider those ordinary folk who suffer as he did?
18th – 24th April National Depression Week www.depressionalliance.org
10th October World Mental Health Day www.wfmh.org For further infomation on any of these events telephone 0845 456 0455. Useful websites www.ukselfhelp.info/links (the self help section is very good) www.healthcare-events.co.uk (details of forthcoming conferences)
Rethink’s error was in overestimating the enlightenment of our community and its willingness to look at the deeper message. This statue has failed to draw the sympathetic interest of people to the problem of mental illness. But it has succeeded spectacularly is uncovering peoples’ true attitudes towards it. Where no insult is intended any perception of such is a mistake on the part of those believing so. Is it really likely that an organisation dedicated to helping those with mental health problems would deliberately set out to insult them? It appears that selectivity is at work here; certain people have chosen to be insulted because they can’t make the effort look at the true motives of those behind the statue. ‘Insulting, ignorant and appalling’
Is this the true feeling in the House of Commons? Churchill is demeaned and insulted by this association with the illness he suffered? How does this attitude reflect when they consider the rest of those who currently suffer? A person can only be whole if untainted by mental illness? If those in power are so short sighted and un-enlightened the future does not bode well.
keep us posted!
‘Is that not an insult both to his memory and to those with genuine mental health problems’?
Deadline for copy for the next edition: 22nd May 2006
I have seen nothing indicating that a genuine sufferer of a mental health illness was given the opportunity to offer their own opinion; as to whether, or not, they had been insulted. Is this because they are considered unimportant as a group and incapable of forming a valid opinion? I am highly unimpressed by the tone of reporting in the press. If it is to be believed then they have revealed in themselves, certain highly placed individuals and the House of Commons an enduring, negative attitude towards those who suffer mental health problems. If it is indeed a victory it rings hollow to me. Andrew Wouldham your voice
spring 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
Pregnancy and mental health problems
17
Pregnancy can be one of the most exciting times for all parents-to-be, but for people with mental illness it can also bring added concerns. As the body changes through pregnancy, mental health can be affected in different ways and day-to-day management of symptoms through medication may no longer be possible or advisable. This is because some types of medication used to treat mental illness can present a risk to an unborn baby. But you can take steps to minimise the risk to yourself and to your baby by understanding the complexities of pregnancy and mental illness.
Antipsychotics –The older antipsychotics (typicals) are generally thought to have a very small risk of causing malformations in the unborn baby. Evidence from research into the more modern atypicals is still being collected, although Olanzapine is widely used in the UK.
Medication and pregnancy Research shows that women who suffer from a psychotic illness are at an increased risk of relapse during pregnancy, often as a result of suddenly stopping their medication when they find out that they are pregnant. Also, several psychotropic drugs carry a small risk of birth defects if taken during pregnancy. But medication accounts for only a small proportion of the total number of birth abnormalities; it has been shown that people with schizophrenia are more likely to have minor physical anomalies than the general population, some apparent from birth, others not till later on in life.
The older ‘tricyclic’ antidepressants have been widely used for many years without any apparent negative effects on the unborn baby, although some babies of mothers who have used these drugs in the last three months can show signs of withdrawal effects after birth.
If you are taking medication for mental illness and wish to become pregnant you should discuss your plans with your doctor. If you are on medication and you find out that you are pregnant, you should contact your doctor immediately. In general, it is desirable to minimise or avoid the use of medication during pregnancy and a plan should be drawn up for you and your doctor to monitor your mental health throughout the pregnancy. The Maudsley Prescribing Guidelines (2005) outline some general principles about prescribing and taking medication for mental illness during pregnancy: • Doctors should treat with drugs only when absolutely necessary, where potential benefit outweighs potential harm – mentally ill women who are pregnant are very likely to require treatment, especially those who have had repeated relapses, • Prospective parents should be fully involved in all discussions regarding the pregnancy, • Women with mental health problems should consider the risk of relapse if thinking about stopping treatment – having a relapse as a result of stopping treatment may result in having to take a higher dose than would otherwise have been necessary, • It’s best to avoid, where possible, using drugs in the first three months of pregnancy – this is the time when the baby’s major organs are being formed, • Use established drugs at the lowest effective dose, • Avoid multiple drug treatments (polypharmacy) where possible, • Parents-to-be should try to make full use of available screening procedures during the pregnancy, • The baby should be monitored after birth in order to check for any signs of withdrawal effects, • All decisions should be accurately documented by the medical team.
Antidepressants – Treatment with antidepressant drugs for women who develop depression during pregnancy should only be used when psychological management techniques have not worked.
The more modern SSRIs also appear not to be linked with causing abnormalities when used during pregnancy. But MAOIs should be avoided in pregnancy because of a suspected increase in the risk of congenital malformations, and the risk of increasing blood pressure to dangerously high levels. Mood stabilisers – The risk to women with bi-polar disorder of relapsing before or after birth is very high if drug based treatment is stopped abruptly, so they are likely to be advised not to stop their treatment. For women who have had a long period of stability and are planning a family, it may be possible to stop treatment before conception and for at least the first three months. This should be discussed by the parents-to-be and their doctor. No mood stabiliser is safe – Lithium has an association to cardiac malfunction although this is low (1 in 1000), Valproate, which has the most known links to foetal abnormalities, carbamazepine and combinations of mood stabilisers should be avoided if possible. After the birth There is an increased risk of new mothers developing depression, or having a new psychiatric episode within three months of birth – 10% of pregnant women will go on to develop a depressive illness. This risk is highest for women with bi-polar disorder. Ideally women should not be separated from their babies during hospitalisation. Special mother and baby units or designated beds on maternity wards are the recommended options for new mothers with mental health problems. If you are worried you are at risk of this you could discuss what you would like to happen in such events with your doctor. Breastfeeding whilst on medication If you are planning to breastfeed you should be aware that small amounts of some medications pass into breast milk. The potential benefits and risks of breastfeeding your baby while taking psychotropic medication should be discussed with your doctor, who should also be able to let you know the specifics related to the particular medication(s) you are taking. spring 2006
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