The Third Congress of the European Federation of Associations of Families of Mentally Ill People (EUFAMI) held in Stockholm, Sweden opened on Friday, 8 October 1999 with a welcome by the President of the organisation, Bas Van Raay, followed by some light entertainment from a local female 'barber shop' group of singers. The theme of the Congress, The Caring Future ... Starts Now, was the culmination of work undertaken at seminars held in Rotterdam, Dublin and Bilbao in the past twelve months on - Best Practice/Standards in the treatment of psychiatric disability Self help and empowerment for people living with psychiatric illness Fighting stigma and discrimination in mental illness Congress proper began at 09.00 the following morning with the opening address by Bas van Raay welcoming the 300 delegates and professional observers. He told Congress that 56,000 families affected by mental illness were represented, reflecting the quality of care being aimed for and the personal responsibility of all concerned with the illness to work towards a more caring future for both sufferers and carers. There then followed a brief resume of the outcomes of the three seminars before proceeding to the main topic of the morning 'Children of parents with mental illness.' There were three presentations: 'Research into risk and protective factors concerning children of parents with mental illness' by Annemi Skerfving, master of social work and social science, Dept.of Social Work, University of Sweden. She spoke of the plight of children where parent(s) suffer from mental illness. Children can be profoundly affected and yet for a long time their situation has seldom been discussed. They have almost become invisible. 'It is important to see and visualise the children of the mentally ill. Adult psychiatry must pay attention to both children and parents and develop protective mechanisms and methods to support them.' 'Källan' (pronounced Shellan) by Eva Waltre, psychologist and project leader. Källan is a group activity for children of parents with mental illness, based in Sweden. This is a 3-year (1996-99) pilot project run by Swedish Schizophrenia Fellowship (Riks-IFS) an organisation representing the interests of people suffering from mental illness and their carers. The project gives knowledge about mental illness, has programmes to suit individual needs, helps children discover their own needs and potentials and enables them to ask for support and help. It encourages verbalisation of feelings. All this is achieved through drama, games and art with children meeting weekly for about two hours for approximately 16 weeks. The name 'Källan' means waterspring. It provides a safe place for children to work through emotions and realise they are not alone. The main aims of the project were to a) support children with a mentally ill parent. It was difficult at first to find the children. Referrals came from Social Work, schools and psychologists, with only a few from adult psychiatry b) work out a programme to suit the needs of the children c) make Källan a permanent activity 'Being a mother to one's mother' - a presentation by Suzanne Osten, Artistic Director at Stockholm Statdteater. Here the speaker told us from personal experience of the reversal of roles where she, as the child, became parent to her mother. She spoke of the confusion caused by her mother's changing moods and levels of illness, and of never knowing quite what to expect. She told us how she coped with life. Congress then split into three symposia. In two, various presenters from different European countries told us of their programmes/research/methods towards the support of children with ill parents. It was heartening to realise that this invisible band of carers is at last being recognised and the help they deserve is gradually filtering through. Though at present this support differs very much from country to country. These presentations highlight the importance of EUFAMI, bringing knowledge forward which all countries can benefit from. The third symposium was a very moving panel discussion with interviews of four 'adult children' - people who had a parent with a serious mental illness, and are now adults. Congress then broke for lunch. We were transported to Stockholm's City Hall - a magnificent building - where we were given a civic reception and treated to a splendid lunch. Feeling refreshed after lunch and a stroll in the sunshine along the waterfront, we returned to the Conference Centre for the afternoon session where the subject was 'Self help and empowerment strategies for people living with psychiatric illness'. The first presentation was by Bas van Raay, psychologist and carer on 'Understanding mental illness in families'. He recounted his experiences with his brother who suffers from schizophrenia. Many of us could identify and empathise with him when he told us how he thought that with love and lots of support he could cure his brother. Sadly this did not happen and he came to the realisation that he could not allow his brother's illness to take over his own life also, and had to take a step back from it. Taking this conscious decision did not mean he loved his brother less. Ron Coleman was unable to attend and his partner Karin Taylor, herself a community mental health team worker, read out his paper 'From Victim to Victor'. His message to Congress was to look at the person and not the illness. Mental illness is part of the person, not the whole. Sufferers can lead meaningful lives. Ron is the author of 'Road to Recovery'. There then followed presentations on educational programmes for a better quality of life in the 21st century. The message from this part of the programme was that a partnership should be built between the care team, carer and patient; that the therapists' ability to form this alliance is crucial. The aim is to increase patient-family understanding. This encourages adherence to the treatment regime and reduces hospitalisation. WPA's (World Psychiatric Association's) 'Schizophrenia - Open the Doors' is the title of their anti stigma campaign dealing with the removal of stigma, especially as it is applied to schizophrenia. Stigma means that people look at you in a different way. There's no understanding - very few job prospects. Stigma influences people's expectations of others and affects their quality of life. It was recognised that there should be increased awareness to combat stigma and that sufferers should know of treatment options. The WPA produce a newsletter which gives some details of the WPA programmes happening elsewhere in the world. Suggestions which emanated from this part of the programme were: Action to change public attitudes, to eliminate discrimination Enhance public information Enhance knowledge of health workers Educate people with schizophrenia, family and friends Promote community involvement EUFAMI are organising a European Anti Stigma Day. Jim van Os, Msc,PhD, associate professor, University of Maastricht and University of London spoke of the early intervention in psychosis: How early and what? There has been an explosion of programmes over the world and a combination of early psychosis training and ongoing research on treatment and recognition of early psychosis hold promise for the future. Esther Twomey, vice president of EUFAMI, teacher and carer, then spoke on 'Carers support programmes'. Her talk was entitled 'Pacification or Power?' and based on the teachings of Ken Alexander, an Australian carer (whose daughter has schizophrenia) and retired industrial chemist has written a book and teaching manual on the training and learning of coping skills for carers. There are some 14 principles - similar to Alcoholics Anonymous. Some points worth consideration from this presentation are: Self help, knowledge and coping skills bring about empowerment Take a risk and step back from the situation - 'this is no gentle passage, but the pain is less' Realise that you do not need to be a hostage to mental illness Experiences can be shared with others Quotation from Esther's presentation - 'When carers acquire coping skills which enhance personal and collective wisdom, greater independence and improved quality of life results for both people with mental illness and their carers.' Congress again separated into three symposia discussing points raised in the afternoon presentations. Sunday dawned bright and fair - no long lie in for us - Congress began again at 09.00 sharp. Lennart Lundin, psychologist and vice president of Riks-IFS opened this session with a short introduction to 'Best practice in the prevention and treatment of psychiatric disability'. Some points made on drug treatment were - a) that only one drug (antipsychotic) at a time should be prescribed irrespective of new or old type, and the patient benefits most from low dosage. b) caution about dosage. Dosage works differently due to way stomach/body works. 60-70% of people will benefit from a 'standard' dose. With Halperidol 2-4mg per day was said to be an optimal dose. It is a clinical task for fine tuning of the dosage. What happens is that at the presentation of first acute episode more and more medicate is given until side effects hit in, then start to reduce. Risperidone - optimum dosage 3mg per day. Olanzapine single dose between 10-20mg. c) Art of using medication is a collaboration of education, psychiatrist, patient, family and psychiatric staff. Expense is not an argument for refusing particular medications. Lars Farde, professor of psychiatry, Dept. of Clinical Neuroscience, Stockholm spoke on 'The art of treatment with neuroleptics'. Johan Cullberg, MD, professor of psychiatry at South Stockholm Health Authority has done some research on early intervention in Sweden, 30% of 'patients' live with families and others now live in own homes. Professor Cullberg spoke about 'The Parachute Project' which is a Swedish multi-centre project for first episode psychosis. 'Philip D Harvey, PhD, Mount Sinai Hospital, New York spoke about 'Neurocognitive functions and neuroleptics' stating that in the USA 5mg per day of Halperidol was said to be very low whereas in Europe it was the norm. In America doctors prescribe much higher doses of medication. His presentation subject was cognitive impairments and skill learning studies. He sees learning as the one cognitive way of seeing improvements and the overall functional outcome of people with schizophrenia. Dieter Naber, Dept of Psychiatry, University of Hamburg spoke on 'Atypical antipsychotics and subjective experience with neuroleptics' stating that instead of reducing psychotic symptoms we should be looking at improving quality of life. Just because you are hallucinating, does not mean that the patient has lost quality of life. A story was told of a man in a mental hospital since 1920s. He missed all the great events of the 20s, Second World War, Vietnam, etc... Psychiatrist on his quarterly round said ' increase in Halperidol has reduced the man's hallucinations - patient doing well!' but the man spent 70 years in hospital. It's the story of the Emperor's new clothes. No-one in psychiatry dares to say what is true, quality of life is important. For the last time, Congress separated into three symposia to discuss points raised in the earlier presentations. The closing of Congress was upbeat. A panel of the EUFAMI working group, Chair Lennart Lundin (Sweden), Susan Kirkwood (UK), Begona Garin (Spain), Kees Zwarthoed (Netherlands), Reina van Mourik (Netherlands), Bertrand Escaiq (France) and Ursula Brand (Germany) answered questions from the floor. There were some items for comment: Children of parents with mental illness - Netherlands work being done - pilot in Sweden - a network is growing within EUFAMI led by Lisbert Gregersen (Denmark) Differences in countries - why so extreme and what are the consequences? - level of research in psychiatry varies - user/carer organisations make stronger changes - resources - European Parliament is being contacted especially with those members on Health Committee Family to Family Progress - not professionals - e.g. Ken Alexander method. - EUFAMI to expand such programmes by facilitating - Use one or more of the 14 principles as a discussion starter - Carers / users want to be empowered - professionals want to educate us. Terminology - respectful correct use of correct words in respective countries is a must, especially when translating. Listening to users/carers/relatives - is important - don't forget other forms of treatment The Congress closed with Bas van Raay, President, reading out the Stockholm Declaration for the year 2000. He asked each member to send the declaration to his/her MEP and this would generate 50,000 signatures. The next Congress is to be held in four years time. From Val: Over 35,000 signatures had been received on the petition for Tampere. I felt hopeful that although things moved slowly, almost ponderously, there is movement forward - at last!