Speaking to power : advocacy for health and social care

175 Pages·2009·2.09 MB·English

by  David Vernon Donnison

Speaking
to power

Advocacy for health
and social care
David Donnison
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Speaking to power
Advocacy for health and social care
David Donnison

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This edition published in Great Britain in 2009 by
The Policy Press
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© The Policy Press 2009
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A catalog record for this book has been requested.
ISBN 978 1 84742 037 4 paperback
ISBN 978 1 84742 038 1 h ardcover
The right of David Donnison to be identified as author of this work has been
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Cover design by Qube Design Associates, Bristol
Printed and bound in Great Britain by TJ International, Padstow, UK
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This book is dedicated to David Brandon (1941–2001),
mental health services user and practitioner, scholar,
teacher and advocate.

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Contents
Why and how we wrote this book vi
Introduction 1
one Origins of advocacy 7
two Scotland gives a lead 25
three What advocates do: their main clients 37
four What advocates do: questions and dilemmas 69
five Groups and communities 89
six Setting up an advocacy project and running it 99
Scott Rorison
seven Volunteers 109
eight Making advocacy accountable 125
nine Roadblocks 139
ten Looking ahead 145
Further reading 159
Index 163

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Speaking to power
why and how we wrote this book
This book was inspired by the Scottish service that provides advocacy
to help people with mental health or learning difficulties. Advocacy for
these and other groups began earlier in other countries of the UK, but
nowhere else is there the free and independent nationwide service that
is to be found in Scotland. When I first got involved, staff of the agency
I joined asked where they could find opportunities for further training
and professional development. Few were available. No surprise there:
the academy always lags about a decade behind new developments in
the field because their teachers need a shelf of books to read before
they can offer a course, and it takes time to do the research and writing
that creates this literature.
So we said, “Let’s write our own book”. We worked on it in small
meetings of advocates held in various parts of the territory our agency
serves: a territory including old industrial towns, comfortable suburbs,
and smaller communities scattered among mountains, lochs and islands;
a territory with a population of nearly 200,000 people and a coastline
longer than the coast of France. Very Scottish.
Central among the readers for whom we have written the book
are people working as advocates or preparing to do so in Scotland or
elsewhere. We hope our book will also be helpful to users of the mental
health services, to those who care for them, the professionals who try
to help them, and anyone interested in the broader development of
the health and social se rvices.
Our advocates brought anonymous but real cases to discuss with
their colleagues at our meetings. To these we added a few others
from colleagues working elsewhere in the same cause. I brought draft
chapters, which were freely criticised and, in 18 months we created
this book. We also sought the help of others who are expert in this
field and asked some of them to comment on the whole draft or on
particular chapters of it.
We could not have written the book without the help of our
clients. Some of them wrote their own stories for us. Others gave their
advocates permission to do this for them. We are grateful to them all.
To protect confidentiality we have disguised these stories with small
changes that preserve their essential truths. We have not mentioned
the names of clients or places; and their advocates’ names are only
acknowledged in this preface.
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Why and how we wrote this book
People tend to seek the help of an advocate when things go wrong
for them. They may feel they are the victims of incompetence, injustice
or worse; and they may be right. Thus the glimpses we give of the work
of public services are often unflattering and may be unfair. There is
another side to every story, but our promise of confidentiality for our
clients precluded us from asking about that. So we invited spokesmen
of the main services involved to read and comment on the relevant
chapters. We are grateful for their help.
At the end of the day, someone has to do most of the writing for a
book of this kind. Someone has to edit other people’s contributions,
find a publisher, correct the proofs and prepare an index. And take the
blame for any errors left in the book. That’s why my name appears
on the cover.
Working with a team of people who are engaged in a cause of
this kind to which they are deeply committed has been a marvellous
experience for me. But it sometimes poses questions about whose voice
the reader of these pages is hearing. I have used the collective “we”
when writing about the agency in which most of the contributors
work, and when saying things that I believe all or most of us would
agree about. But I have used the more personal “I” when offering
reminiscences or judgements that other members of the team may
not share. If that seems a bit confusing I can only say that it truthfully
reflects the cheerfully creative confusion of our collaboration.
I offer warmest thanks to all those who presented cases and discussed
drafts at our meetings: Neil Anderson, Charlie Baird, Gerry Burke,
Dawn Clarke, Vivien Dance, Mary Doonan, Cathy Douglas, Lindsey
Fox Denham, Karen Kerr, Caroline MacAlaster, Maureen Moore,
Joan Mulroy, Andrew P ark, Maureen Parker, Scott Rorison and Sue
Spalton. Scott also wrote Chapter Six, for which he is better equipped
than any of us.
Among many others who helped us I particularly want to thank:
The Right Honourable Bruce Millan, who chaired the Committee
that laid the foundations for the whole scheme we are writing about.
Bruce gave me many hours of his time and commented in detail on
chapters recording events in which he played a leading role. Councillor
Jim Kiddie, who was an active member of Millan’s Committee, gave
me a lot of help. Shaben Begum and her colleagues at the Scottish
Independent Advocacy Alliance, and Nicola Smith and her colleagues
at Enable Scotland who work for people with learning disabilities also
gave us a lot of help. Hector Mackenzie, a senior official in the Scottish
Home and Health Department at the time the advocacy service was
built into Scottish law, gave me important insights into these events.
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Speaking to power
Caroline Airs and her colleagues at GAIN – the Gateshead Advice
and Information Network – met with me for a long discussion and
commented helpfully on a draft. Professor John Blackie, at Strathclyde
University, gave me a perspective that was both warmly humane and
legally sophisticated. Donna Strachan and her colleagues at CAPS
– the Consultation and Advocacy Promotion Service in Edinburgh
– introduced me to an East Coast world that I needed to know more
about. Maureen Beaton and Peter Woolfson gave me wise advice about
the work of tribunals. Helpfully critical comments on the whole draft
or many chapters of it were made by Kay Jones, Joan Mulroy and
Rachel Donnison; and colleagues in the Universities of Bristol, Glasgow,
Northumbria and York came to seminars to discuss the project with
me. I am grateful to all of them.
Finally, Kay Carmichael, my wife, gave me at every stage her usual
combination of frank criticism and loving comradeship.
David Donnison
February 2009

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introduction
This book is about advocacy – particularly, but not only, for people
who have learning disabilities or mental health difficulties. The practical
experience we will draw on comes mainly from Scotland where new
and important things have been happening in this field. Here are two
examples of the work we will be writing about.
The first is summed up in a big book – a Personal Care Plan, or
‘PCP’ in the jargon of social work and community nursing. Prepared
by an advocate, with help from colleagues in other services, this book is
packed with words, pictures, medical prescriptions, names and addresses.
It speaks for a young woman – let’s call her Sandra – in her mid-twenties.
Sandra has stunted limbs and cannot walk, sit up or feed herself. It takes two
people, using a specially made hoist, to lift her from a bed to a chair, or in
and out of the swimming pool she visits regularly. She lives at home with her
parents. Those who help them to care for her – 32 staff from 13 different
agencies see her in a typical week – thought she was unable to speak or to
understand anything they said. But her advocate, who works for a local agency,
found by listening carefully to her and her parents that she has more than 20
words and sounds that have meanings that she understands pretty well. Indeed
her grandmother, who has always loved her dearly, conducts long conversations
with her in a language no one else quite understands. Sandra also has hopes
and fears, friends she likes to be with, and ambitions for the future.
Her personal care plan e xplains these and many other things: the foods she
can and cannot eat, the movements that hurt her, the medicines she needs
and much else. It shows, with photographs, how to lift and move her, and
how to take her for a swim.
Equally important, it has brought together 32 nurses, social workers and
professional carers – most of whom had never met before – and helped them
to get to know each other and to agree on the best ways to help Sandra
achieve the things she wants to do. They had to start by breaking out of the
hierarchies and specialisms that divide our public service professions and
to recognise that they were all equally needed to help the only important
person – Sandra herself. They have gained a shared pride in enhancing the
life of someone they have come to know. And, because agencies change, their
staff move around and Sandra’s needs change too, they have to keep in touch
and revise her care plan regularly.
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