MAKING THINGS BETTER

Conference held at Angus College Conference Centre Keptie Road, Arbroath on 1 March 2001

CONTENTS

We would like to acknowledge and thank the following people who made our Conference possible.

Financial Support
Angus Council Social Work Department
PPP Health Care Medical Trust

Chairing the Conference
Bill Robertson, Director of Social Work, Angus

Ongoing support
Mary Weir, Chief Executive, NSF (Scotland)

For his efforts to secure funding which made free places available to service users
Richard Howatt, Director Angus Mental Health Association

Speakers
Ann Rankine, Angus Mental Health Association (with special thanks for stepping in at the last minute)
Janice Uttley and Amanda Bryan, Bradford Home Treatment Service
Stewart Dall, Cheryl Pennington and Tony Reddington , Core Clubhouse Presentation

Valuable advice and practical help
Dale Montgomery, NSF (Scotland)

Organising and catering
Staff at Angus College Conference Centre

A final thank you to all those who came along, particularly in bad weather, to support the Conference and make a big contribution to the morning.

Cathy Hamilton
Carers Support Officer (Tayside)

Although the day was cut short due to bad weather, the evaluation outcome was very positive. Altogether, including the speakers, 60 people attended, 50% of the evaluation sheets were returned, with positive feedback from carers/service users and staff.

We hoped to provide carers/service users/professionals with information about the different innovative ways of providing services.

This was clearly provided by the Bradford Home Treatment Team and the 1st House Core Clubhouse.

As the name of the Conference indicated, the aim of the day was about, Making Things Better, not only for carers/service users but also for the staff who work in the services. We all recognise that there are many aspects of the system that can be improved and have to change before real partner-ship working can happen.

The Conference heard some stimulating examples of innovative and effective services which are a departure from the mainstream medical approach. The success of these initiatives has been the commitment to joint working and partnership, and this commitment is going to be the cornerstone of making things better.

The Bradford Home Treatment Service was established in 1996. It has been developed by Bradford Community Health Trust in conjunction with Bradford Social Services and it provides intensive support for people suffering acute mental health crises. The Service was established because of pressure on the local in-patient unit and because of pressure from User Organisations in the City of Bradford for better community-based crisis support.

The team is multidisciplinary in makeup with psychiatric nurses, a social worker, support staff and medical input. The Service operates on a 24-hour, seven days per week basis where patients are visited every day, sometimes up to two or three times a day.

It has taken some time for the Home Treatment team to integrate fully with other aspects of Mental Health Services but this has now been achieved and in the past 12 months there has been a dramatic reduction in the use of in-patient facilities.

While the Service has been very successful in developing an alternative to hospitalisation the greatest innovation has been in terms of the team's philosophy of care. The team believes that to work effectively with patients who experience serious mental health problems there has to be a central focus on the establishment of trust between professionals and service users.

To help achieve this an ex-user of Mental Health Services who had worked for a number of years in the area of disability rights was employed by the team at an early stage. He has worked to challenge stereotypes and assumptions and has helped the team develop a genuinely user-sensitive culture. The team has also sought to question traditional psychiatric approaches to madness and distress and adopt a need- led rather than a diagnosis-centred approach to care.

The operations of the Bradford Home Treatment Service have been monitored by a researcher from the University of Bradford. The results of this research indicate that the team has been largely successful in its attempts to develop trusting relationships with users. In depth qualitative interviews were earned outwith users of the Home Treatment Service and a control group of users from a different sector who had only experienced hospital care. Users satisfaction with Home Treatment care was very high. (These interviews are being analysed in more depth at present.)

This finding was supported by a questionnaire-based study of users of the Service in which very positive views of the Service were recorded. Users will now often contact the Service in times of crisis and intensive support can be organised relatively easily. The team is thus able to offer early interventions across a range of clinical problems and has become quite skilful in the assessment and management of risk.

The team prides itself on its orientation towards innovation and change. It has piloted the use of client-held case notes, uses mobile phone technology in an innovative way and is currently developing a 'Home to Home' project. The team was one of three finalists for the 'Hospital Doctor of the Year Award' in 1997 and 1999. The Service was also awarded Beacon status in 1999 and recognised as a site of good practice. As a Beacon Service the team is funded for two years to disseminate information on its work to others.

Many recipients of mental health services feel that psychiatry is oppressive and dehumanising (MIND survey 1990). The move from the institution to the community has resulted in professionals, nationally and internationally, attempting to challenge traditional approaches and developing less oppressive ways of working. The Bradford Home Treatment Service is trying to change not only the site of service delivery but also the nature of the service delivered. A fundamental part of this change is the development of a team philosophy which underpins not only the care delivered to clients but the ways in which the team works together.

Acknowledging the power imbalance between users and staff forms a crucial part of the philosophy. From this, one of the main concerns of the team has been to work towards a more equal set of relationships. It is our aim that users and carers should become actively involved in the planning and development of the service. To facilitate this a service user has been employed as a member of the Home Treatment team specifically to give a user perspective on service delivery.

The team aims to work in a non-discriminatory way by accepting and being willing to work with an individual's understanding of their own issues. This involves acknowledging an individual's culture and life experience, taking into account race, religion, gender, disability, sexuality and social class.

Home Treatment will attempt to provide a choice of language and gender of workers and develop creative ways of working which are appropriate to an individual's needs. We also acknowledge the stigma and discrimination which people seen as having mental health problems face from both the public and mental health workers.

Relationships with clients are based on honesty, respect, and a genuine attempt to create a more equal partnership. These elements are essential not only when working directly with the client but also in discussions between staff about clients.

The team recognises the importance of supporting individuals and helping them to define and make sense of their own experiences in their terms rather than staff imposing their definitions and labels. Staff will sometimes challenge the ideas of users but will not silence their ideas or undermine the confidence of the user. This involves staff being prepared to accept and work with ideas and beliefs that may differ from their own.

All team members share a sense of ownership regarding the development of the service. The personal development of staff members is seen as essential for the development of the team as a whole. Diversity is recognised as a vital component of the team, different life experiences and values of staff members are acknowledged and respected. We will continue to develop and explore innovative ideas from a variety of sources. The team views the ongoing process of change as an essential part of providing a quality service, this is reflected in the team's ability to challenge and deconstruct existing ways of working.

As a medical student and young doctor I often wondered if I would one day have something important to contribute to medicine. Being against publishing papers for the sake of it or simply because it was expected to advance one's career, I have not thus far been in print. But that has now changed I now wish to add my voice to those who see serious problems with the whole enterprise of traditional psychiatry.

For nearly three years I have been working with the Bradford Home Treatment Team. Recently designated a National Health Service Beacon Service, the 18- strong team provides a true alternative to hospital admission for those in acute and severe mental distress. The Service provides help and care 24 hours a day, seven days per week. In the last year the Home Treatment Service has reduced admissions to the local psychiatric hospital by 50%. It has proved that Home Treatment is a viable option for many of those with acute severe mental problems.

However, the real innovation of the Bradford Home Treatment Service is not so much the change in location of care i.e. from institution to community, but the philosophy on which that care is based. The philosophy is about treating those with mental distress with respect. It is about building trusting relationships with the users of the Service, giving them time. Time to be heard and valued. There is no room for the 'them and us' attitude which so often blights mental health work. Users' problems and symptoms are seen within the context of their lives.

The thrust of intervention is not to defect, order and categorise symptoms to produce diagnosis. Instead, the drive is to understand, support and respond to needs. Practical help is offered. The philosophy is critical of the medical model as being the only means of understanding madness and mental 'illness' and is keen to validate other perspectives. Users' own coping strategies and alternative therapies are supported and encouraged. Evaluation and audit of the Bradford Home Treatment Service clearly demonstrates that users find this way of working both more helpful and less stigmatising than what they have previously experienced.

The importance of this philosophy of care cannot be overstated and its ramifications cannot be overemphasised. Its acceptance and practise across the Mental Health Services would revolutionise those Services and drastically alter what we call psychiatry. Certainly users are in no doubt about this.

I suspect that traditional psychiatry will find such a philosophy challenging and damaging to its own agenda; but it must be so challenged. Traditional psychiatry, in my view, has not well served those it purports to help. But in actual fact, this should come as no surprise given its history and credentials. Its history is seriously chequered and its claim to be scientific is dubious, for example, the notion of schizophrenia. Traditional psychiatry needs to be criticised and deconstructed: stripped of all that is not useful and replaced by that which is more helpful. It is in this cause that I raise my voice. I believe I have found that 'important contribution' that I wondered about more than a decade ago.

References:

1. Evaluation of the Bradford Home Treatment Service Final Report. Cohen B. University of Bradford - February 1999.

2. Boyle M. Schizophrenia: A Scientific Delusion? Routledge. New York. 1990.

Since the start of 1996 I've been the Service User Development Worker with the Bradford Home Treatment Service, one of the few survivors employed openly by the NHS. Home Treatment provides intensive 24-hour support at home for people in serious crises who would otherwise be admitted to mental hospitals, through daily visits and phone contact (mobile phones are provided if people don't have phones).

The essential difference between Bradford Home Treatment Team and most statutory mental health services (including other home treatment teams) is that we don't give people mental illness diagnoses. Instead the focus is on trying to address people's actual needs.

My post, only open to survivors, was specifically created to promote a user/survivor perspective within the team, and to help maintain this non- medical philosophy. The service has been highly successful. In 1999 we were awarded Beacon status: official recognition of our service as an example of best practice within the NHS, with funding to promote our way of working to mental health professionals and users in other parts of the UK.

It's a team of twenty, including community mental health nurses, support workers and a social worker. I work 9-5, four days a week. Initially my role was about challenging the team, and presenting a user perspective in training sessions and review meetings (where clients' care is discussed) etc. At the beginning it seemed a bit like a balancing act - I needed to be accepted as part of the team, but also, I needed to maintain a certain distance from the others to maintain a user/survivor perspective. Four years on this no longer seems a major problem.

I have, inevitably grown closer to other members of the team, but at the same time I've finally realised that I will always be slightly set apart anyway because I'm out doing different things - the rest of the team are focused supporting clients, while my role involves gathering information and maintaining close links with local user/survivor groups as well as contributing to team discussions and debates.

The team recruited knowing we were going to be working in radical ways, knowing my role, and we all started at the same time. So it was easier for me to be accepted than if I'd been introduced into an established team. There were some problems of course - some team members were more on board with non-medical ways of working than others. We have different nursing grades on the team, and in the early days it was fascinating to observe that the more senior the nursing grade, the harder it was for the nurse in question to accept more equal ways of working with clients.

Although I was quickly accepted with the Home Treatment Team, certain professionals elsewhere weren't so welcoming. There was a lot of anxiety (dare I say, paranoia?) about me in certain quarters. When I attended a ward round at the local mental hospital for the first time, the consultant (now departed) who clearly didn't want me to be there but who had no power to make me leave, explained to me in front of everyone just how important confidentiality was, and stressed that I mustn't repeat anything I heard within the room.

As an experienced ex-advocate, and current NHS employee (to say nothing of having personal experience of what it feels like to have professionals discussing you behind your back) I did feel very patronised. It also irritated me that the presence of a nursing student at the ward round was, of course, not questioned. Some professionals get very upset at the idea of having a survivor present when they discuss their clients with other professionals. I wonder why? It has also been instructive to meet other Trust employees on training courses I've attended. People don't see me as a service user even after I've introduced myself. I've heard a lot of negative, patronising attitudes because they see me as a fellow employee!

Four years on, there is more of a shared sense of responsibility for everyone in the team, not just me, to challenge, to try to maintain a critical stance towards the traditional medical perspective that dominate mental health services and that so many people find unhelpful. How critical the team is towards its own practice goes in phases. Mental health professionals understandably tend to retreat back to familiar medical approaches when under pressure. My role has become less confrontational and more collaborative.

I also do a lot of training from a survivor perspective outside the team, for different groups of professionals and users. For example, I've done training sessions for junior doctors at the local mental hospitals ( a bit like banging your head against a brick wall), trainee approved social workers (one guy was brilliant, some of the others didn't get it no matter what I said), and student nurses (these seemed to be the most aware professional group, though they usually fail the SANE test*). We often have student nurses on placement for three months at a time, and I have regular training and discussion sessions with them as part of their time here.

There are a few other User Development Worker posts in the NHS, focused on Trust-wide user involvement and consultation issues. There are also schemes to employ users in traditional roles such as support workers, occupational therapists or admin workers - such as the excellent Pathfinder Employment Programme run by South West London and St Georges Mental Health NHS Trust. But so far I'm aware of no posts exactly like mine i.e. a user employed in a development role to work with a single mental health team, to help maintain a user-friendly philosophy. However, recently I've become aware of several initiatives in different parts of the country, including Bradford, to try to set up more of such posts. It seems only a matter of time before some are established.

Over the four years we've been in existence, a lot of professionals from Bradford and further afield, have visited our office to see how we work. I usually talk to them about my role and user/survivor perspectives. In 1998 we had a psychiatrist from a Canadian home treatment service as a guest. We were explaining that it wasn't necessary for a psychiatrist to see every client, as the other workers had the skills, experience and confidence to support people without such input. He was baffled, "But surely nurses can't make diagnoses?" � "Well" said our manager "as we don't diagnose people, but focus on people's actual problems instead, that doesn't arise." You could see the Canadian psychiatrist struggling to grasp this alien concept. It was a moment that suddenly made me realise how different we are to most other mental health services. Hopefully, the Canadian psychiatrist went home with something to think about too.

Oh, the SANE test? � Ask a group of mental health professionals or students to call out the names of all the different user groups they can think of. Someone always mentions SANE. Never fails.

(Revised version of an article first published in The Advocate, newsletter of the UK Advocacy Network, May 1999.)

In 1948, a handful of men and women with major mental illness started a quiet revolution in their own lives, as well as the entire field of mental health care. Having emerged from periods of hospitalisation, they chose not to go into typical isolation but instead to gather together regularly in New York City. They named their group WANA - We Are Not Alone, and supported each other in adjusting to everyday life.

Membership of the group expanded at such a rate that eventually premises were found and the idea of hiring staff debated. The members wanted staff who would work alongside them in a genuine partnership rather than the staff/patient relationship which was the norm for the time. After hiring and firing for a while, eventually they managed to find people who would work in a way that was acceptable.

One of the people they hired was John Beard - a great believer in the employability of people with enduring mental health problems. Members of staff of Fountain House became involved in the day to day running of their house, they discovered through necessity members became involved in the various areas of work which were named work units.

Clerical Unit - responsible for office and administration tasks Kitchen Dining Room - responsible for provision and preparation of meals Maintenance - responsible for upkeep of the building Transitional Employment - responsible for finding and maintaining work placements in the local community Education Unit - providing in-house educational support and assistance towards further education.

Work units were formed according to the needs of the house and the needs of the membership, other units such as horticulture, research, housing, and training were to follow.

The transitional employment programme became an integral part of the Clubhouse as members were supported in working in real workplaces for real money. The positive effects of regaining independence were undisputed for many individuals who went through the programme and eventually went on to obtain independent employment.

Clubhouse also recognised the need for members to socialise and after-house social activities were planned. Fountain House was open during weekends and celebrated public holidays with special events. From those early beginnings to the present, over 400 Clubhouses have been developed worldwide from Dunfermline to Moscow to Melbourne to Hong Kong. I feel issues that individuals with mental health problems have are the same worldwide, i.e. financial, housing and employment, therefore because Clubhouse addresses these issues it can be duplicated worldwide with positive results. We also benefit from having the opportunity of being involved in the International Centre For Clubhouse Development (ICCD).

The ICCD is a federation of communities, called Clubhouses, who's mission is to develop new Clubhouses and strengthen existing Clubhouses, and to serve as the hub of this vibrant network of communities around the world. The ICCD oversees the creation and review of the Standards for Clubhouse programmes. Promotes, supports and conducts research on the efficacy of the model that is ethical, consistent with the standards for Clubhouse programmes and is crucial to the future of Clubhouses everywhere. It advocates for the rights of people with mental illness and the protection of the Clubhouse movement. Serves as the international clearinghouse for Clubhouse information and referrals.

Economically, Clubhouse is a service worth looking at - a couple of years ago people were talking about setting up one-stop shops - Clubhouse is a one-stop shop which responds to individual needs. The costs for running a Clubhouse are relatively small when you consider all the areas we cover psychosocial rehabilitation, pre- vocational work units, outreach, transitional employment, supported employment, education, social activities etc.

The Core Clubhouse has managed to develop from very humble beginnings in one room of a community centre to a small flat which was structurally faulty to the wonderful house we now have in a prime residential area of Dunfermline. Our journey has not been an easy one, lack of funding and staffing made our progress difficult at times and we learned a lot from the challenges we have overcome. One of the main things we have recognised is that everyone has a talent or skill that can be used in Clubhouse and through the work confidence and self esteem builds up and we can take on even bigger things.

We hosted the UK Clubhouse Conference in 1999 and are now preparing to host the European Conference in Edinburgh in 2002. We were the first Clubhouse to be established in Scotland and now we are the first accredited Clubhouse in Scotland. In November 2000 we achieved a three-year certification which to date has been awarded to only 70 of the 450 Clubhouses worldwide.

Stewart � At first when I joined the Core Clubhouse, I didn't think I would become so passionate about something I believe in so much. The Clubhouse is much more than a place to go, it has given me many opportunities. I now do presentations like this one, also national and international events. In addition, I have completed the three-week training in Fountain House, New York.

Tony � I have been a member of Core Clubhouse for about five years. I help out in all the different areas in the Clubhouse, from reception to maintenance, to food service. I enjoy working on the budgets and I'm very good with the financial side of things. I've made many friends in the Core Clubhouse and don't feel alone anymore. I have worked on a Transitional Employment Placement as a cleaner in a local bingo hall. Apart from having extra money in my pocket, it felt good to be back in the workforce.

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