«Recovering Ordinary Lives The strategy for occupational therapy in mental health services 2007–2017 Results from service user and carer focus ...»
Recovering Ordinary Lives
The strategy for occupational therapy
in mental health services 2007–2017
Results from service user and carer focus groups
College of Occupational Therapists
About the publisher
The College of Occupational Therapists is a wholly owned
subsidiary of the British Association of Occupational Therapists
(BAOT) and operates as a registered charity. It represents the
profession nationally and internationally, and contributes widely
to policy consultations throughout the UK. The College sets the professional and educational standards for occupational therapy, providing leadership, guidance and information relating to research and development, education, practice and lifelong learning. In addition, 11 accredited specialist sections support expert clinical practice.
www.cot.org.uk By 2017, mental health service provision in the United Kingdom will be better for the active role and inspirational leadership provided by the cultural heritage and identity of occupational therapy, which at its core is social in nature and belief and, therefore, will deliver the kind of care that service users want, need and deserve.
Cover photograph © Shirley Brown, BA Hons, 2006, reproduced with permission. This photograph was produced by a mental health service user for the strategy. The picture symbolises her journey through mental illness to recovery. The glass bowl represents the constraints of her mental illness; she can see the world but can’t access it, be a part of it.
Through the intervention of occupational therapy she is able to grow, break free (symbolised by the broken twigs), quite literally escape, join the world and leave her illness behind.
Recovering Ordinary Lives The strategy for occupational therapy in mental health services 2007–2017 Results from service user and carer focus groups College of Occupational Therapists Core The College of Occupational Therapists, 106–114 Borough High Street, Southwark, London SE1 1LB www.cot.org.uk Copyright © College of Occupational Therapists, London, 2006.
First published in Great Britain in December 2006 by the College of Occupational Therapists.
This document should be referenced as:
College of Occupational Therapists (2006) Recovering ordinary lives: the strategy for occupational therapy in mental health services 2007–2017, results from service user and carer focus groups. (Core.) London: COT.
All rights reserved, including translation. No part of this publication may be reproduced, stored in a retrieval system or transmitted, by any form or any means, electronic, mechanical, photocopying or otherwise without the prior permission of the College of Occupational Therapists, unless otherwise agreed or indicated.
Whilst every effort is made to ensure accuracy, the College of Occupational Therapists shall not be liable for any loss or damage either directly or indirectly resulting from the use of this publication.
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Printed and bound in Great Britain.
For free distribution only. UK applicable.
As a part of developing and delivering the strategy for occupational therapy in mental health services, the Sainsbury Centre for Mental Health (the project team) involved service users and carers in the consultation process.
The steering group responsible for the strategy unanimously felt that their contributions are so important to the process that they should be included in this suite of documents.
The following is a report from a focus group discussion by members of the Highland Users Group (HUG) on behalf of the Sainsbury Centre for Mental Health as part of their work in developing a strategy for the College of Occupational Therapists. The text has been reproduced as submitted, apart from minor style changes.
For more information on the Highland Users Group, or an information pack, please contact Graham Morgan, Highland Community Care Forum, Highland
House, 20 Longman Road, Inverness IV1 1RY; telephone: (01463) 718817; fax:
(01463) 718818; email: hug www.hug.uk.net With thanks to all the members of HUG and other mental health service users who contributed to this report.
Highland Users Group (HUG) What is HUG?
HUG stands for the Highland Users Group, which is a network of people who use, or have used, mental health services in the Highlands.
At present, HUG has approximately 305 members and 13 branches across the Highlands. HUG has been in existence now for nine years.
HUG wants people with mental health problems to live without discrimination and to be equal partners in their communities. They should be respected for their diversity and who they are.
We hope to achieve this by:
• speaking out about the services we need and the lives we want to lead;
• educating the public, professionals and young people about our lives and experiences.
Between them, members of HUG have experience of nearly all the mental health services in the Highlands.
HUG’s aims are as follows:
• to be the voice of people in the Highlands who have experienced mental health problems;
• to promote the interests of people in the Highlands who use or have used mental health services;
• to eliminate stigma and discrimination against people with mental health problems;
• to promote equality of opportunity for people with mental health problems, irrespective of creed, sexuality, gender, race or disability;
• to improve understanding about the lives of people with mental health problems;
• to participate in the planning, development and management of services for service users at a local, Highland and national level;
• to identify gaps in services and to campaign to have them filled.
IntroductionIn November 2005 HUG was approached by the Sainsbury Centre for Mental Health (SCMH) to run a focus group of people with a mental illness in the Highlands. They had been commissioned to develop a strategy for occupational therapy services across the UK and wanted to hear from members of HUG.
They wished a service user, who could also be an advocacy worker, to facilitate a group of HUG members to discuss 8 preset questions and then provide a report on the findings of the group.
SCMH provided an introductory letter, a project brief, a series of questions, and a statement of principles and vision. (The vision and the questions were sent out to HUG members in advance of the meeting.) The HUG members were recruited from the HUG Friday Forum, a working group of active HUG members mainly based around Inverness, and from the HUG Round Table, the HUG committee. This was because places were limited.
On the day, 11 out of the 14 people who wanted to attend did so. Five of the participants were from Inverness and the rest were drawn from Caithness, Easter Ross and Badenoch and Strathspey.
The approximate age range of participants was between 30 and 60. There were six women and five men. There were no people who identified themselves as being from an ethnic minority or from the gay, lesbian or transgender communities, although no one was asked this question directly.
None of the participants were currently in full time employment although most had been in the past. No one had any visible disability. There was one single mother, a number of other parents and around half the people were currently single. Nearly everyone had direct experience of occupational therapy and one person had also experienced occupational therapy for a physical problem. Nearly everyone had experience of hospitalisation for a mental illness and the conditions people had experienced varied from schizophrenia, depression, manic depression, anxiety, bulimia and addiction, to post-traumatic stress disorder and personality disorder.
A presentation was made by two occupational therapists about what occupational therapy is. This prompted discussion and many questions, which the occupational therapists played a part in before they left, and the prepared questions were addressed over the next two and a half hours.
The questions had been adapted a little in advance of the meeting, as they were not thought to be as accessible as they could be. They were further adapted in the meeting according to the sense we could make of them.
Notes were taken of the meeting and then converted into this report, which was sent out to the HUG participants to check that they were happy with it and to allow any comments to be added if they wished. Some other HUG members who used occupational therapy services also saw the report and added some additional comments.
The group felt that the discussion was so interesting that they decided to ask for the final document to be used locally for our own service. Our thanks are due to the Sainsbury Centre for Mental Health for allowing this to happen.
What do we mean by occupation?
Occupation had many meanings for us. Being occupied can keep us well especially when we feel that what we have done is productive. Achieving something can prevent illness. If we do things with no end result then we can feel that what we are doing is done in vain and may question why we did it in the first place.
This isn’t the case for everyone; some of us have led lives that concentrate on all occupation leading to success and a result for those of us in this situation is learning to do things just for the pleasure that they give. This can be as important as any tangible achievement.
Doing things increases our sense of self-worth. If we have nothing to do then we can become very isolated and this works against us. Some of the things we do and benefit from, such as music or singing, have no tangible benefit but leave us feeling invigorated and happy.
The same applies to physical activity. This increases our sense of wellbeing and improves our mental health. Many of us feel that physical and mental health are closely entwined and that we need to respect both. This influences how we feel about ourselves. If we neglect either of these we can lose out.
Creative occupation is very important to some of us but we can need a catalyst to stimulate creative activity.
Occupation can be very simple; having a structure to our day or a daily routine can make a big difference to us.
Equally, occupation is not just about activity, for some of us the chance to take up paid employment is a fundamental part of how we want to spend our time. Apart from payment it also increases our sense of dignity and selfworth.
Sometimes it is not so much about activity, it is also about being with other people: ‘talk together, learn together.’
Occupational therapy and activity We felt that there is a distinction between occupation that is a part of therapy and the occupation that is just everyday activity despite the fact that both help with our wellbeing.
Some of us lose the ability to do ordinary activities when we go through illness and may need some re-education about our lifestyles.
The intervention of occupational therapy can help give us a language that we can use which helps us understand the benefits of the things we do.
It has many other aspects: it may help us to laugh and enjoy ourselves but equally it may help us create an ordinary routine, which may seem simple but is a big step for some of us. For others it can give us the skills and motivation to look for paid employment. It can also help us with our feelings;
it may help us see the funny side of life or gain the ability to cope with failure.
We need to be sure when we start occupational therapy that it will suit us as individuals; it has to have a diverse approach in order to achieve this. If we are to engage with it, it is important that we do things that we want to do. These are often things that we are good at or enjoy.
It is also important that it strikes a balance between helping us regain the ability to resume the skills of everyday living without us feeling that we are being patronised or asked to do tasks that are over-simplistic. This needs to be matched with helping us to do things that we can succeed at and yet at the same time not creating a pressure to succeed that we can’t live up to.
What should occupational therapists do?
We had many ideas about what we thought occupational therapists can and should do. These were varied but included the following.
We thought that many professionals concentrate on the problems and conditions that we face but that occupational therapy can and should help us achieve a balance in our lives by treating us holistically and addressing mind, body and spirit.
We wanted them to help us sort out negative thoughts, to provide activities that promote inner peace and to quieten our minds and ultimately to remove us from some of our internal pain.
We felt that their role in rehabilitation was very important (especially if we also have physical problems) and that the activities they could help us with included helping us find activity, helping us to do stuff purely for the fun it involved, increasing our wellbeing and helping to re-integrate us back into our communities.
We felt that they could play a big role (maybe vital) in the process of recovery and had a role in ‘kick starting your mind into recovery and occupation.’ This involved helping us find our own pathway in life and helping us learn the skills that would allow us to look after ourselves.