The Blackthorn Garden Project - Centre for Mental Health

The Blackthorn
Garden Project
Community Care in the
context of Primary Care

1995

Julia Nehring and Robert Gareth Hill
© The Sainsbury Centre for Mental Health, 1995

The Sainsbury Centre for Mental Health
134-138 Borough High Street
London SE1 1LB
Tel: 020 7827 8300 Fax: 020 7403 9482

The Blackthorn Garden Project 2

The Blackthorn Garden Project

Community Care in the Context of Primary Care

By Julia Nehring and Robert Gareth Hill

© The Sainsbury Centre for Mental Health 1995

All rights reserved. No part of this publication may be reproduced, stored in a
retrieval system, or transmitted in any form or by any means, electronic, mechanical,
photo-copying, recording or otherwise without the prior permission of the
publisher.

ISBN: 1 870480 20 1

Published by
The Sainsbury Centre for Mental Health
134 -138 Borough High Street
London
SE11LB

0171 403 8790


Table of Contents
1. The Blackthorn Garden Project ................................... 5

2. The Co-workers .......................................................... 19

3. The Co-workers’ Views................................................. 30

4. Integrating Community and Primary Care ................. 41

5. Conclusions....................................................................... 51

6. Appendix 1........................................................................ 54

7. Appendix 2........................................................................ 59

8. References......................................................................... 64


Acknowledgements
The researchers wish to thank the co-workers, volunteers and staff of
Blackthorn Garden and the general practitioners and therapists working in the
Blackthorn Medical Centre and Trust. We also wish to thank Orly Klein,
researcher at The Sainsbury Centre for Mental Health for interviewing
agencies referring people to the Garden Project.

The study was funded by grants from the Gatsby Trust Charitable Foundation
and from the South-East Thames Primary Care Development Fund.


Blackthorn Garden – A GP’s
perspective
As students one took up medicine in part at least to fulfill ideals of helping
one's fellow man. A few years as a GP however confirm that some patients'
problems are too complex and ingrained to be altered much by one's limited
training, best efforts and the number of hours in the day. Indeed these patients,
many of whom have long-term mental health problems, seem to remind one of
one's inadequacy. The numbers now in the community for whom the GP has
clinical responsibility and their frequent attendance can have significant impact
on the morale of doctors and the practice team. Their demands can encourage
negative and unloving behaviour (impatience, irritation, can't be bothered; of
which one is duly ashamed), simply because the problems they bring are too
great and one knows from experience that one's concerted effort even over
long periods brings little return.

Modern medicine lays heavy emphasis on treating disease while unwittingly
leaving the patient himself on the sidelines. For long-term mental health
problems this will simply not do. Promises of a cure are not forthcoming and
these illnesses are on the increase.

A co-ordinated service is called for which addresses the needs of each
individual and draws on his aspirations, talents and effort. This can be achieved
by a working community like Blackthorn which also strives to understand and
improve the human condition in illness.

Working at Blackthorn is an uplifting experience. The sense of community
created by staff and co-workers alike lightens one's load. The burdens of the
day can be shared be it with an illness like schizophrenia or the apparently
tedious refrain of one's usual workload. One can bear to look at such icebergs
only when the means to tackle them is close at hand.

Morale runs high in the Garden because things seem possible which didn't
before. Warmth, understanding and a sense of belonging for individuals who
had previously felt out in the cold allow them to begin to free up and move.
The wide variety of tasks there and coaching available to master them,
restores a sense of purpose through being gainfully employed. The high quality


of services and produce available to the general public who frequent the
Garden leads to much genuine appreciation and gratitude raising confidence
and self-respect amongst co-workers. One is freer to concentrate on medical
aspects while others in the circle can make better use than before of one's
contribution. In between times, the social life that fills the Cafe and surrounds
the washing up bowl enlivens the day's routine with laughter and camaraderie.

Contact with patients, co-workers, families, colleagues and health professionals
both in and relating to the practice is positive because one is in a position to
offer help. Doors that used to feel closed feel more open, at least in that now
one has the means to try.

Everyone understands that numbers have to be limited, that this primary care
project is an experimental model. We are now privileged to be working with
The King's Fund, London, and four other practices in Bristol, Parkwood
Maidstone, Shrewsbury and Stroud, to demonstrate over the next 3 years that
Blackthorn Medical Centre and Garden is indeed a replicable model. This
would not have been possible without the substantial help we have received
from The Primary Care Development Fund and The Sainsbury Centre for
Mental Health.

David McGavin
26.11.94


1. The Blackthorn Garden Project
Introduction

Blackthorn Garden is a community care project for people with long-term
mental health problems and other chronic or disabling illnesses. Unlike most
'community care' projects, it is based in a primary care setting. It developed
from an initiative 'the Blackthorn Trusf, pioneered by an NHS general practice
in Maidstone. The Trust was set up to work in conjunction with the general
practice to provide anthroposophical creative therapies (art therapy, music
therapy and eurythmy therapy), counselling and support groups to patients
referred from the practice who had not responded to conventional treatment.
Individuals referred to the Trust have had problems such as multiple sclerosis,
chronic fatigue syndrome, cancer and depression. They receive the creative
therapies together with mainstream medical treatments and anthroposophical
remedies prescribed by the general practitioners. The work of the Blackthorn
Trust and the theoretical basis underlying it (anthroposophy) are described in
Appendix 1.

The Blackthorn Trust and General Practice embarked on a new project - 'the
Blackthorn Garden' - in September 1991, following approaches from Health
and Social Services who were looking for opportunities to develop 'care in the
community'. The aim was to create a supportive work environment in the
community for people with long-term mental health problems. The capital
funding for the new project was provided by Health and Social Services,
charitable foundations and local companies. Researchers from RDP (now The
Sainsbury Centre for Mental Health) were invited to evaluate the first two
years of the project as part of a larger study of work projects for people with
long-term mental health problems. The study was supported by funding from
the Gatsby Trust Charitable Foundation and from the South-East Thames
Primary Care Development Fund.

This report and a previous publication 'Work, Empowerment and Community'
(Nehring et al., 1993) describe the development of the Blackthorn Garden
Project during its first two years (January 1992 - December 1993). Although
the project has a number of unique features, we describe it mainly as a model
which illustrates how the community care of people with mental health


problems can be integrated with primary care. The evaluation has ended, but
of course the Blackthorn Garden Project continues to evolve. Nevertheless,
we write about the project as it appeared to us during the first two years -
1992 and 1993.

Blackthorn Garden

The Blackthorn Garden Project was set up at the end of 1991 on land adjacent
to a new medical centre which had been built for the Blackthorn Trust and
General Practice. Its aim is to provide work rehabilitation and community
support for people with mental health problems, particularly those who are
disabled by their illnesses and who have not responded to other treatments.
Such individuals, referred from the Blackthorn Medical Centre, by other GPs
and by psychiatrists, are taken into the project as 'co-workers'. They work
alongside the project staff and 'volunteers' drawn from the local community,
many of whom are or have been patients of the Trust.

Co-workers were referred to the project gradually during the first year and by
the end of the year, 31 had joined and 25 were still involved. By Autumn 1993
the project had taken on 55 co-workers, 38 of whom were attending regularly,
with four coming occasionally. At the end of the second year, between 40 and
50 co-workers were working in the project each week. There were four
members of staff: the Director, the Garden Project Leader, the Bakery Project
Leader and a part-time Cafe Co-ordinator as well as eight volunteers.
The aims of the Blackthorn Garden Project are:

1. ‘To establish a place of rehabilitation through work for the
mentally ill in the community.’

The project aims to engage co-workers in valued and fulfilling work
which will help them to develop confidence and general work skills.

2. 'To create a place of social integration and cultural activity in
the Barming District of Maidstone.’

The aim is 'to foster an environment in which individuals are recognised,
can make friends, help one another and so overcome isolation and self-


orientation'. It is also hoped to engage and involve the local community,
thereby reducing the stigma associated with mental illness.

3. 'To encourage the meeting and working together of the
various disciplines concerned with mental health and
community care.’

Work at Blackthorn - 'From Land to Table*

"The working atmosphere in the garden, bakery and cafe calls on the
strong and healthy side of all co-workers rather than focusing on their
illnesses.' (Blackthorn Garden leaflet)

Work plays a central part in Blackthorn Garden. It aims to restore the
sense of meaning and purpose which many co-workers have lost in the course
of their chronic and disabling illnesses. There are opportunities to take on
valued roles, develop skills and build confidence and self-esteem. Work
provides the structure through which all the other elements function. For
example, the working day at Blackthorn is punctuated by shared meals and
breaks which offer opportunities for social interaction. Twice a week co-
workers, volunteers and staff take time off work as a group for eurythmy and
craft sessions. Some co-workers also receive other creative therapies or
counselling while working in the project. However, in contrast to the
remainder of the Trust, the opportunity to work is the main thing which brings
people to Blackthorn Garden.

The kitchen and cafe
The main work areas in Blackthorn Garden are the kitchen and cafe, and the
garden itself. The well-equipped kitchen and cafe are located in an attractive
wooden building in the centre of the garden, a short distance from the
Blackthorn Medical Centre. The cafe is used by the general public, patients of
the general practice and Trust, co-workers, staff and volunteers. Two staff
work in the kitchen helping co-workers and volunteers to prepare food for the
cafe and to bake bread for sale. The food is of a high standard and where
possible is prepared using organic produce grown by ‘biodynamic' methods.
It is hoped that high quality food will help to improve the health of those
working in the project. Co-workers are involved in planning and preparing
meals, serving customers, selling bread, biscuits and cakes, washing up and


clearing away. Different co-workers take on different tasks, some find working
in the kitchen less stressful than serving customers in the cafe.

The garden
Much of the produce used in the kitchen comes from the garden where
vegetables, herbs, fruit and flowers are grown. The 'biodynamic method' (an
anthroposophical organic and ecological approach) is used. A number of co-
workers choose to work solely in the garden, some because they enjoy
working out of doors, others because they are able to work at their own pace.
Moreover, the garden offers a range of tasks from sowing and propagation to
digging and making compost- some of which can be done alone and others in
pairs or small groups. This wide range of tasks enables individuals with different
physical or emotional problems to find a niche which suits them.

The Social Environment - Creating Community

The social environment at Blackthorn is strongly influenced by the
anthroposophical approach. This approach has led not only to new ways of
working in medicine but also to social developments in education and for
people with special needs. For example, Steiner (Waldorf) schools use an
educational approach which aims to develop all aspects of the child, so that,
rather than just passing exams, children can fully meet the demands of life.
Camphill schools, set up to provide curative education for children in need of
special care, aim to recognise the unique human potential of each child.
Camphill village communities (developed as intentionally created communities
for adults) attempt to be both 'communities 'with' and not 'for' the person with
special needs', and 'to stand in the mainstream of modern life, not withdrawing
from it'. In the Camphill villages adults with special needs live with families and
others and are able to make a contribution to the work and social life of the
village communities.

In Blackthorn Garden, the Camphill philosophy of being a community 'with' and
not 'for' people with long-term mental health problems is extremely important.
It is for this reason that individuals are regarded and known as 'co-workers'
rather than as patients or clients. The researchers found a strong sense of
friendship and community and of mutual support. This was remarked on by a
number of the co-workers:


'I like the coming together of it - everybody seems to know everybody else and
makes a point of getting to know you - there's a general feeling of community.'

'When I first arrived I was made to feel one of the group - that carries on
throughout your time here...'

'Working in Blackthorn Garden has made me feel part of a family...'

'...we all feel responsible for each other.'

Like Camphill, Blackthorn Garden, while forming a deliberately created
community, does not function in isolation away 'from the mainstream of
modem life'. Co-workers are encouraged to make and retain links with people
and organisations outside. At the community level, the project both engages
members of the local community in its work and provides services and facilities
of use to them. Patients of the general practice and Trust, and local people
come in to use the cafe and to buy bread, organic garden produce and crafts.
Bread and biscuits are also sold in local shops and handcrafts can be bought in
the Trust's own charity shop. Open days, talks and social evenings enable local
people to learn more about the work of the Garden Project and Trust. A
regular newsletter keeps the local and wider community in touch with events
at Blackthorn and helps to encourage a sense of ownership and involvement.

Mental Health and Community Care - Forging Links

Educating health professionals about complementary medicine has always been
part of the programme of the Blackthorn Trust. Even before the Garden
Project was established, seminars were held for doctors and other health
professionals who wanted to find out more about the Trust's work. Topics
included 'Learning with the Dying', 'Patients as Pioneers' and 'Depressive Illness
- Working for Positive Change'. GP trainees and those studying counselling, art
and music therapy have been attached to the general practice and the Trust.
The Garden Project attracts visitors interested in the role of work and
gardening in rehabilitating and supporting people with mental health problems.

In addition to its educational role, Blackthorn Garden aims to work with those
concerned with mental health and community care. To this end links have been
established with local psychiatric teams, day centres, hostels and other


providers of community services. Part of the Director's role is to ensure good
communication and collaboration with other agencies, including Social Services
and the Maidstone Priority Care NHS Trust. Blackthorn Garden has also
developed links with other anthroposophical projects including a Camphill
community in Bristol which specialises in working with people with long-term
mental health problems and with two residential anthroposophical clinics.

Blackthorn Garden Staff

At the start of 1992 Blackthorn Garden had just two paid staff - the Director
and the Horticultural Project Leader. In April 1992 a Master Baker was
employed to lead the work in the developing bakery and cafe. In October
1992, following a steady increase in customers, one of the volunteers was
recruited as a part-time member of staff to co-ordinate the running of the cafe.
In addition, the Garden Project received administrative support from the
Blackthorn Medical Centre and two sessions a week from the Trust Art
Therapist who ran a craft group.

Blackthorn Garden staff brought different skills and experiences to the project.
None of them had worked in the statutory mental health services or in
primary care. The Director had a background in company law, had worked as a
management consultant specialising in social change and had taught in the
Centre for Social Development at Emerson College. The Horticultural Project
Leader had horticultural training, had worked as a gardener and had developed
and managed a gardening project for people with learning difficulties. The Bakery
Project Leader was a Master Baker, had worked in a biodynamic bakery and had
been a director of a residential farm for people with mental health problems. The
Cafe Co-ordinator had been a patient of the Trust who had gone on to become a
volunteer in the Garden Project. The Director and the Baker had previous
experience of the anthroposophical approach.

During 1992 and 1993, the researchers talked to Blackthorn Garden staff about their
perceptions of the Garden Project and their experiences of working there. The staff
felt that the project provided a safe and supportive environment in which co-
workers could work, make friendships and feel part of a community. It was hoped
that the co-workers would gradually become stronger, more independent and more
able to cope with their chronic illnesses. One staff member felt that coming to
Blackthorn Garden gave co-workers:


'...a purpose to get up, to live, to overcome problems and fears and to help others.'

Co-workers were perceived to be actively contributing to the life and work of the
project. One staff member, asked what the co-workers had done in the previous
week, listed:

'Watering, hoeing, glazing, feeding, harvesting, painting, sowing, clearing, pricking
out, potting, selling, washing pots - plus breaks and lunch - talking, singing, laughing,
and worrying.'

Working in the developing project posed a number of challenges for Blackthorn
Garden staff. They had to ensure a balance between the practical tasks, commercial
pressures and the supportive and therapeutic aspects of the Garden Project. They
had to organise a range of tasks in their own areas and decide on the day's work
with each co-worker and volunteer. They had to be flexible and able to adapt and
improvise when co-workers failed to turn up, arrived late or needed time out. This
lack of predictability posed particular problems for the cafe and bakery because of
the need to serve customers and to produce bread for sale. Staff had to learn both
to work alongside co-workers and to stand back and enable co-workers to function
at their own pace despite the external pressures. Even so, it was difficult to 'listen
out for problems' as well as getting the work done. In practice, staff working in the
cafe, kitchen and garden tended to concentrate on the practical nature of their tasks,
while mental health and social problems were seen as being the responsibility of the
Project Director and the GPs. Nevertheless, they had to be constantly available to
co-workers, volunteers and customers while somehow maintaining the rhythm and
momentum of the work.

This need to be constantly available was a source of stress - as was the erratic
attendance of some of the co-workers and their slow progress and fluctuating mental
health. The weekly staff meetings with the Project Director and one of the GPs
helped to reduce frustration by enabling staff to understand the co-workers' needs,
illnesses and social situations.

The Director of Blackthorn Garden had a number of roles and responsibilities
including management of the project, the staff and the finances. He introduced co-
workers to the project, monitored their progress and met weekly with the GPs and
creative therapists. He liaised with individuals and agencies outside the project,
particularly with the local mental health services. He counselled individual co-


workers and kept in touch with their families and with what was happening in their
lives. By doing so, he hoped to give the co-workers a feeling of being 'respected,
appreciated and seen'. At the same time he was closely involved in all aspects of the
Garden Project and in supporting the volunteers and staff. Like the other staff
members, the Director felt under pressure to be constantly available and had to
rapidly switch his attention between competing areas.

Blackthorn Garden Volunteers

Volunteers make an important contribution to the work of the Blackthorn Trust -
not just by fundraising but also by helping to provide social support to patients of the
Trust. Volunteers also play an important part in Blackthorn Garden, supporting the
work of the project and forming part of the community.

Volunteers were involved from the start of the Garden Project and by autumn 1993
eight were coming regularly on a part-time basis. They came mainly from the local
community and nearly all were or had been patients of the Trust, although one
had become involved as a result of an interest in anthroposophy and
biodynamic gardening. Volunteers worked alongside the staff and co-workers
and some took on particular responsibilities, one later being employed as the
joint co-ordinator of the cafe. Like the staff they had to be flexible and willing
to adapt when co-workers failed to turn up or needed time-out or support.
The volunteers themselves also needed support and some commented that
when they were going through difficult times they were helped by others in the
project. One particularly appreciated the support she had received from the
Project Director following a bereavement.

Some of the volunteers initially found relating to co-workers with disabling
mental health problems difficult and felt they gained some understanding from
the experience of working alongside them. One remarked:

'It was very hard to start with...I didn't quite understand. It has given me insight
into the problems there are - and that so many people don't want to know. It's
given me a deeper understanding into the problems...and it's not always easy.'


Funding

Capital costs and funding
The capital cost of the Blackthorn Garden Project was £84,000. This included
the costs of rebuilding and refurbishing the wooden building which housed the
kitchen and bakery, cafe, activity room and offices, equipping the kitchen and
bakery, and furnishing the cafe and offices. These costs were met by £15,000
from Maidstone District Health Authority and £41,000 raised from charitable
trusts and companies, supplemented by £28,000 from the first years's grant.

Revenue funding and running costs
The District Health Authority and Kent County Council Social Services agreed
to support the Garden Project with Joint Funding of £56,000 a year (to be
increased in line with inflation) for seven years from April 1991. During the
study period, funding was also obtained from the South-East Thames Regional
Health Authority Primary Care Development Fund, the Mental Health Foundation
and from donations.

1993 was the first year in which there was a full complement of staff and co-workers.
During that year the staffing consisted of the Horticultural and Bakery Project
Leaders, the part-time Cafe Co-ordinator, tihe Director who worked four days a
week, the Administrator from the Medical Centre who worked one day a week and
the Trust's Art Therapist who worked one day a week. The Garden Project offered
75 places per week to co-workers.

During 1993 funding for salaries (£81,000), gas and electricity (£5,500), building
maintenance and equipment (£5,000), and other overheads (£3,000) came from Joint
Funding (£59,500), the South-East Thames Primary Care Development Fund
(£17,000), the Mental Health Foundation (£12,000) and from private donations
(£1,500). The Primary Care Development Fund also gave £10,000 to part-fund The
Sainsbury Centre's study. In addition, the sales of produce and refreshments in the
cafe generated £31,000. Of this £15,500 was spent on supplies for the garden and
provisions for the kitchen and bakery. Another £11,000 went in contributions to co-
workers.

At the end of 1993 one of the challenges facing the Garden Project was the need to
secure continuing and adequate funding.


Blackthorn Garden as a Developing Project

During the two years of the study, Blackthorn Garden was in every sense a
developing project. Starting with only a handful of co-workers at the beginning
of 1992, work initially centred around developing the vegetable garden and
nursery from a neglected site, while an old wooden building was converted to
house the bakery, cafe, activity room and offices. At this stage a greenhouse
provided the only shelter for co-workers, while the Director's office was a
garden shed. As the refurbishment of the cafe progressed, the Bakery Project
Leader worked with co-workers and volunteers producing trial batches of
bread and meals for those in the project and a few visitors. The cafe officially
opened to visitors in August 1992 and the work gradually expanded until by
the end of the year they were serving between 25 and 40 customers each day.
During 1993 the project acquired a further half an acre of land.

On joining the Garden Project, co-workers agreed to work on specified days
in the garden, bakery or cafe. On average co-workers attended 74% of their
'contracted time' during the first year, with only three working less than 50%
of their contracted time, while five worked more than their agreed sessions. In
the second year, even more co-workers came regularly to the project, the
mean attendance being 89% of contracted time. Initially the co-workers' were
unpaid, but from October 1992, as income from the cafe and the sales of bread
and produce increased, they were given a share of the takings. Every month a
proportion of the takings was set aside to be divided between the co-workers,
enabling them to earn up to £10 each week (an amount which would not affect
their benefits), and a fund for outings.

Blackthorn Garden staff valued being part of an evolving project, but working
in a new and developing project required a high degree of adaptability. In the
first year the Garden Project was being built in a very concrete sense - the
land was cleared, the hut refurbished, equipment bought and the kitchen and
bakery set up. At this stage the emphasis was on acquiring the materials
needed for the nursery, cafe and bakery to operate. However, the project's
role in providing community care and work rehabilitation was not 'on hold'
until all the resources were available - co-workers, volunteers and members of
the community were involved in building the Garden Project right from the
start. In the second year, the emphasis moved to organising the work areas
and establishing work routines and consolidating some of the informal


processes which had emerged in the first year. During this period the Director
concentrated on making links and building up relationships with other mental
health services and on co-ordinating the various professionals working with
individual co-workers. At the end of the busy second year, many of the work
routines and links were in place and staff hoped that the next stage would
allow them to focus more on the individual needs of the co-workers in their
work areas.

A frequent concern in work-based rehabilitation projects is the potential for
tension between therapeutic aims and commercial demands (e.g. see Nehring
et al., 1993). For example, the Horticultural Project Leader was torn between
the needs of the co-workers for support and supervision and the necessity of
keeping the garden watered and weeded to ensure a crop would be produced.
This became more of a problem as production and sales increased, as well as
the number of co-workers working in the garden. To some extent this
dilemma was lessened at the end of the second year by the establishment of
key co-workers to supervise particular areas of work (for example, the
vegetable garden, landscaping a new area, or preparing produce for sale). This
sharing of responsibility for the running of the garden enabled the Horticultural
Project Leader to move from a position of leading to one of supporting and
delegating and meant that he could respond more flexibly to individual needs.
Similarly, in the cafe and bakery there were tensions between the need to get
through the tasks, produce high quality food and to make a profit, and the
need to spend sufficient time with individual co-workers. Tensions between
the therapeutic and commercial aims of Blackthorn Garden existed and were
mentioned by co-workers, but they appeared to be balanced by the very
strong sense of community and support.

During the first two years of the project there were changes in the co-workers
- both at an individual level and as a group. Individuals appeared stronger, more
able to trust and more ready to take on responsibility. The warm and
accepting atmosphere enabled them to gradually build on their existing
strengths even if their psychiatric symptoms did not disappear. Some co-
workers began to take on particular roles - for example, stock-taking or bread-
making - reflecting both increased confidence and commitment to the project.
In the second year there was a greater feeling of community and of mutual
support, more discussion in the co-workers' meetings, and social events and
outings were well attended.


However compared to the rapid development of the Garden Project, the
changes in the co-workers occurred very gradually - particularly in those with
long-term and disabling mental health problems. Psychiatric symptoms often
remained and none moved quickly into work or open employment. Staff had to
learn to accept the reality of this slow progress and to reconsider what their
aims should be in working with this group.

Summary

Blackthorn Garden is a primary care project which offers work, rehabilitation
and community support for people with long-term mental health problems and
other disabling conditions. The project developed rapidly during its first two
years and co-workers, volunteers and members of the local community were
involved from the start. It works closely with the Blackthorn General Practice
and Trust and has made links with local mental health services. The cafe,
bakery and garden function as valuable resources for local people and patients
of the Blackthorn Medical Centre. The Garden Project shows how the
community care of people with mental health problems can be integrated with
primary care and local communities.


2. The Co-workers
Blackthorn Garden was set up to be both a community care and a primary
care project. Hence it was expected that the project would take on co-
workers with a wide variety of problems and needs, but that the majority
would fall into two main groups.

The first of these groups consisted of people with long-term and severe mental
health problems such as schizophrenia and bipolar (manic depressive) illness.
Schizophrenia is characterised by psychotic experiences such as delusions and
hallucinations, by disordered thinking and by 'negative symptoms' such as social
withdrawal, underactivity and lack of drive. These symptoms are frequently
accompanied by profound disturbances in social functioning including loss of
self-care and social skills, social isolation and the inability to gain or to hold
down employment. Bipolar illnesses may be accompanied by psychotic
symptoms but are characterised by fluctuating and disabling mood swings,
which also result in considerable disruption to jobs and relationships. People
with these types of problems often spend long periods in hospital or in
sheltered accommodation, or require intensive support from their families.
With the closure of the large psychiatric hospitals, there is a need to develop
new resources to support people with such long-term and disabling mental
health problems in community settings. The planned closure of Oakwood
Hospital in Maidstone was one of the reasons Health and Social Services
invited the Blackthorn Trust to set up a community work project for people
with mental health problems.

The second group the Garden Project aimed to engage were people with
chronic neurotic or personality difficulties who are often mainly supported by
GPs. These include people with anxiety or depressive disorders which may be
related to physical illnesses, family problems or social circumstances. Those
with personality disorders have long-standing problems which prevent them
functioning effectively in many areas of their lives and in some cases lead to
self-harm. Others with chronic physical illnesses or disabilities suffer low
morale, poor confidence and low self-esteem as a result of problems which can
be helped little by medical treatments. It was hoped that the Blackthorn
Garden Project would improve such people's coping abilities and the quality of
their lives by providing them with social support and a sense of purpose.


One of the aims of the study was to construct a detailed picture of the 31 co-
workers who joined the Garden Project in its first year. This was achieved by a
combination of questionnaires, rating scales and (where co-workers gave
permission) information from project staff and from medical notes. Co-
workers who started in 1992 were assessed during their first month in the
project.

Co-workers in the First Year

During the first year, 15 men (48.4%) and 16 women (51.6%) joined the
Garden Project, their ages ranging from 15 to 61 years (average 35.8). All were
white and 30 (97.0%) had been born in the United Kingdom.

21 (67.7%) were single, seven (22.6%) were married or living with a partner,
two (6.5%) were separated or divorced and one had been widowed.

Ten co-workers (32.3%) were living with their parents, seven (22.6%) with
partners, and four (12.9%) with other relatives. Of the remainder, four (12.9%)
were in-patients, three (9.7%) lived in group homes, and three (9.7%) lived
alone.

How were the co-workers referred?
22 (71.0%) of the co-workers had been referred by their general practitioner -
19 of these being registered with the Blackthorn Medical Centre. Three (9.7%)
had been referred from the local district psychiatric hospital (Oakwood) where
they were inpatients. Another was an inpatient in an anthroposophical clinic,
having been transferred from a London psychiatric hospital. One had been
referred from a local group home and a 15 year old boy by his school. Three
people had heard about the Trust and referred themselves directly. Six (20.4%)
of the co-workers lived outside Maidstone in Kent or South London and
travelled considerable distances to get to the project.

Diagnoses
Each co-worker was given a diagnosis by the research psychiatrist using ICD
10 criteria (WHO, 1992). Seven (22.6%) had schizophrenia, schizoaffective
disorder or delusional disorder. Three (9.7%) had bipolar illnesses, two being
currently depressed and one in remission. Seven (22.6%) had depressive
illnesses, one following treatment for cancer with metastatic spread. Four


(12.9%) had neurotic disorders including anxiety, obsessional compulsive
disorder and school phobia; one of this group had been treated for cancer.
Three (9.7%) were given a primary diagnosis of personality disorder (two being
labelled anxious/avoidant and one emotionally unstable). Two (6.5%) had a
primary diagnosis of mild learning difficulty, one having significant behavioural
problems.

Of the remaining co-workers, one had an organic amnesia following a head
injury, one had Gilles de la Tourette's syndrome complicated by behavioural
problems, one had benzodiazepine withdrawal syndrome following a
supervised attempt to come off benzodiazepines, one was dependent on
alcohol and one was physically disabled by post-traumatic dystonia.

Five co-workers had physical disabilities or significant medical conditions as
well as mental health problems, including cerebral palsy and late-onset asthma.

Use of mental health services
Co-workers were asked about their previous use of mental health services. 25
(77.4%) reported some contact with the mental health services, the average
age of referral being 22 years 10 months (range 13-42 years).

The average length of time since first contact with the psychiatric services was
18 years 3 months (range less than one year to 52 years).

15 (48.4%) of the co-workers had been admitted at least once for psychiatric
treatment. Amongst these, the mean number of admissions was 2.7 (range 1-
6). Length of longest admission ranged from 2 weeks to 27 years (mean 2 years
8 months, median 6.0 months). When the admission of 27 years was excluded
then the mean length of longest admission became 9.3 months. 12 of the co-
workers (40.0%) had used mental health day services at some time in the past
and these included day hospitals, day centres, sheltered work facilities and
drop-in or social clubs.

Four (12.9%) of the co-workers were receiving inpatient treatment while
attending the Garden Project. Of the remainder seven co-workers (26.9%) had
seen their psychiatrist in the previous three months, two (7.7%) were also
supported by community psychiatric nurses and two were attending a depot
clinic. Four (12.9%) had seen a social worker in the previous three months.


Use of primary care services
21 (70.0%) of the co-workers had seen their general practitioner in the
previous three months and one received support from a general practice
nurse. Three (10.0%) had received counselling provided by the Trust and three
(10.0%) had been befriended by volunteers.

Use of medication
17 of the co-workers (54.8%) were taking at least one psychiatric drug. 14
(46.7%) were taking anti-psychotic drugs, seven (22.6%) receiving depot
injections. Six (20.7%) were prescribed Lithium to stabilise their mood and
seven (24.1%) were taking antidepressants. Nine (29.0%) were taking drugs for
medical problems or were receiving anthroposophical remedies. Five (16.1%)
were not taking any medication.

Mental health measures
The co-workers' mental health was rated using three measures:

1. The Brief Psychiatric Rating Scale
29 co-workers were rated on a 19 item version of the Brief Psychiatric
Rating Scale (BPRS) - a semi-structured interview used to assess
psychiatric symptoms (Overall and Gorham, 1962). Co-workers were
asked about symptoms over the previous month.

The mean total score was 15.3 (median 15.0, standard deviation 7.6,
range 2 - 33).

The scores for four sub-scales were as follows:

'thinking disturbance': mean 2.9
median 2.0
st. dev. 3.0
range 0-11
'anxiety/depression': mean 5.2
median 6.0
st. dev. 2.4
range 1-10
'hostility/suspiciousness': mean 2.1
median 2.0


st. dev. 1.9
range 0-6
'retardation/withdrawal': mean 2.4
median 2.0
st. dev. 2.5
range 0-8

These ratings may have underestimated the degree of psychiatric disturbance
since, in order to increase reliability, when the rater was uncertain which of
two scores to give on a particular item the lower score was always chosen.
Furthermore, the BPRS tends to measure 'positive symptoms' better than the
'negative symptoms' found in long-term illnesses. Nevertheless the results
indicate that the co-workers had a number of psychiatric symptoms and, in
particular, that there was a high level of depression and anxiety. This was
confirmed by self-assessments using scales designed to measure depressive
symptoms and general levels of anxiety.

2. The Beck Depression Inventory
26 co-workers rated themselves on the Beck Depression Inventory - a
self-rating scale used to measure depressive symptoms (Beck et al.,
1961). The mean score was 18.3 (standard deviation 9.4, range 3 - 50).
20 co-workers had scores greater than 10 - the cut-off used when
screening populations for depressive symptoms. Nine had scores of 21
or more -a cut off which is often used in research studies of clinical
depression.

3. The Spielberger Trait Anxiety Inventory
23 co-workers rated themselves on the Trait scale of the Spielberger
State-Trait Anxiety Inventory which measures general levels of anxiety
(Spielberger et al., 1970). Scores can range from a minimum of 20 to a
maximum score of 80. The mean score for co-workers was 53.7
(median 54.0, standard deviation 9.8, range 35 - 73). This can be
compared with a mean for psychiatric inpatients of 46.6 obtained from
hospitals in the United States (Spielberger et al., 1970).


Social support
Social isolation, loneliness and difficulties in relationships are common issues
for people with mental health problems. Hence co-workers were asked about
their families, friendships and social support.

Most co-workers at Blackthorn Garden appeared to have strong family links.
Almost all (93.5%) said they were in contact with at least one relative and 28
(93.3%) had been in contact with a member of their family in the last month.
23 (74.2%) of the co-workers could name a friend, partner or relative in whom
they could confide.

However, 11 co-workers (35.5%) had no close friends and 19 (61.3%) saw
friends or went out socially less than once a week. Only nine (29.0%) felt they
had no difficulty making friends and only six (19.4%) felt they had no difficulty
mixing with others. Four people (12.9%) were always lonely, eight (25.8%)
often lonely and 26 (83.9%) felt cut off from others at least some of the time.

Social functioning
Social functioning is often impaired in those with serious and chronic mental
health problems. Co-workers were rated on two measures of social
functioning - the Social Behaviour Schedule (Wykes and Sturt, 1986) which
rates problems in social behaviour and the Global Assessment of Functioning
Scale (DSMIII-R, 1987) which provides an overall picture.

1. The Social Behaviour Schedule
At the end of their first month in the Garden Project, 27 co-workers
were rated on the Social Behaviour Schedule using information obtained
from the Project Director. Like most of the available social functioning
measures, this scale records problems in social behaviour rather than
individuals' strengths. There are 21 items relating both to deficits in
normal social behaviour such as self-care and to disturbed behaviour
such as laughing or talking to oneself. The intensity or frequency of a
problem is rated on a scale of 0 - 3. Items scoring 2 or more were
included in the total score.

The mean total score was 3.4, (range 0 -14), indicating that co-workers
had an average of 3.4 behavioural problems which occurred quite
frequently and restricted their social functioning. This can be compared


with a mean of 4.4 obtained in the TAPS evaluation of the functioning of
long-stay patients in Friern and Claybury Hospitals (Leff, 1994).

The sub-scales were as follows:

Communication problems mean 0.8
range 0–5

Behavioural deficits or disturbance mean 2.6
range 0 – 12

14 co-workers had other behavioural problems not measured by the
sub-scales, such as obsessional hand washing or agitation, which were
restricting their functioning.

2. The Global Assessment of Functioning Scale
30 co-workers were rated by the research psychiatrist on the Global
Assessment of Functioning Scale which gave a measure of overall
functioning during their first month in the project. Ratings are made on a
scale of 0 - 90, where 90 indicates good functioning in all areas and
scores below 50 indicate serious symptoms and serious impairment in
social and occupational functioning. The mean score for the co-workers
was 48.9 (range 15 - 75). Four co-workers scored 30 or less indicating
that their behaviour was seriously influenced by psychotic symptoms or
an inability to function in almost all areas.

Work history, education and occupational functioning
The Garden Project offered co-workers the chance to regain or to develop
general work skills. 25 co-workers (80.6%) had worked in a full-time job in the
past, but the mean time out of work was 7 years 11 months (range 6 months
to 40 years). This factor alone would have made it difficult for them to find a
job in open employment. The mean time worked in their last full-time job was
3 years 10 months but the range was considerable -one week to 25 years. Two
co-workers (6.5%) had part-time jobs while they were working in the Garden
Project during the first year.

12 co-workers (38.7%) had some form of vocational training and six (19.4%)
had attended a university or polytechnic. Three (9.7%) had obtained degrees,


two (6.5%) had diplomas and five (16.1%) had occupational qualifications. Of
the remainder, two (6.5%) had A levels, one (3.2%) had RSA English and
another five (16.1%) at least one O level, CSE or GCSE. Therefore, compared
to the general population a number of the co-workers had enjoyed good
educational opportunities. Nevertheless, 13 (41.9%) co-workers had no
education or training since leaving school and possessed no qualifications.
Three (9.7%) reported difficulties with reading.

While unemployed, five co-workers (17.9%) had been on the Manpower
Services Commission or Department of Employment Training Agency work or
training schemes. Six (20.0%) were registered as disabled. Of these, four
(13.3%) had been assessed at an Employment Rehabilitation Centre and three
(10.0%) had worked in sheltered work schemes.

Issues From the First Year

Women in Blackthorn Garden
In the first year 16 of the 31 co-workers were women (52%) and this
proportion was maintained in the second year (28 out of 55,51%). This is an
important finding as women are usually under-represented in work projects
for people with mental health problems. For example, women made up a third
or less of the workforce in the other work rehabilitation projects studied by
The Sainsbury Centre for Mental Health (Nehring et al., 1993). While men are
more likely to be referred onto secondary mental health services, community
surveys show that women have a higher prevalence of mental health problems.
Recent community surveys have found that 8.7 -15.0% of women have mental
health problems compared with 7.1 -12.5% of men (Dean, 1988). Hence, the
equal representation of women in the Garden Project may reflect the numbers
with mental health problems in the local population and result from the
project's close relationship with primary care.

The range of co-workers supported
The data on the co-workers in the first year shows that Blackthorn Garden
had successfully engaged co-workers of all ages, from a variety of backgrounds
and with a wide range of problems and needs. Co-workers included both those
with long-term and disabling conditions such as schizophrenia and bipolar
illness who are often treated by specialist mental health services, and those


with chronic mental health, physical and personality problems who usually
receive long-term support from their GPs.

Chapter 4 discusses the use of primary care to support people with serious
and disabling mental health problems in their local communities and how this
was achieved in Blackthorn Garden. The needs of those with chronic neurotic,
personality or physical disorders are also important. It has been estimated that
10% of consultations in general practice are for mental health problems
(HMSO, 1979) but most patients have complaints such as anxiety, depression,
tension headaches or insomnia which are often related to stress and which
recover in time. However, the second group supported by the Garden Project
represented the subgroup of primary care patients who have chronic or
recurring neurotic conditions, personality difficulties or disabling physical
problems. They are helped only to a limited extent by conventional medical
treatments and require long-term support from their GPs. They frequently
have a mixture of anxiety and depression and their mental health problems are
complicated by physical symptoms, poor physical health and social difficulties.
While GPs may get to know these patients, their families and social
circumstances very well over the years, the amount of time they can give them
in the normal practice setting is limited. Many receive a variety of psychotropic
drugs but there are few opportunities for counselling, psychological therapies
or other forms of support. The establishment of the Blackthorn Trust met
some of the needs of this group by providing counselling and the creative
therapies. The opening of Blackthorn Garden provided them with social
support, meaningful occupation and a chance to contribute.

The initial interviews showed that this group of co-workers particularly saw
the Garden Project in terms of opportunities for personal development - such
as gaining confidence (especially in social situations), making friends, becoming
more assertive, learning to consider their own needs and developing the
spiritual side of their existence. Other goals related to personal attainment
including getting back to work, taking exams and deciding on future plans.
Many of these co-workers also hoped to improve their physical health and
general well-being by working in the project.


Co-workers in the Second Year

General profile
During the second year 55 co-workers were involved in the Garden Project,
27 having joined in the second year. Their problems included schizophrenia,
anxiety, depression, learning difficulties, chronic stress related to family
problems and multiple sclerosis. Eight of the co-workers were in-patients in
Oakwood Hospital at some point during the year. Attendance was high - co-
workers attending on average for 89% of their agreed time although this figure
is artificially high due to over attendance of some co-workers (range 50 -
215%). During the year ten co-workers stopped attending, of whom six had
started in 1993. Two left after finding jobs - although one was later admitted to
hospital. Two left after moving to other areas and one because he was too
weak to travel. One woman stopped coming because she was highly anxious
and needed to be accompanied. One man with severe behavioural problems
was asked to leave after becoming disturbed on a number of occasions. Two
men decided that the project was not for them and one woman who was very
socially isolated stopped coming for no clear reason.

The follow-up group
The follow-up study was focused on those co-workers with long-term, serious
and disabling mental health problems who traditionally are supported by
secondary mental health services. This group included co-workers with
schizophrenia, bipolar illness and psychotic depression. Co-workers from this
group who joined the Garden Project in the first year were rated on the
measures of mental health, social and general functioning during their first
month in the project and again after 12 months. At the end of the first year,
30% of the co-workers in the follow-up group were no longer working in the
Garden Project. While this is of concern, it is not a high percentage when
compared to other day services.

Given the small size of the final sample and the large amount of variability in
the group, the researchers were not surprised to find no significant differences
in mental health, social or general functioning after 12 months. Even if a larger
sample had been available it could still have been predicted that their mental
health problems would have remained fairly stable, given the nature of their
illnesses and the wide range of factors which affect them (such as
accommodation, finances and family issues). It might have been expected that


providing meaningful activity and occupation would result in improvements in
negative symptoms - such as increased drive and more social contact (Wing
and Brown, 1970). However, the small numbers in the follow-up study and the
lack of emphasis on negative symptoms in the Brief Psychiatric Rating Scale
made it unlikely that any change would be detected. A similar difficulty arose
with the Social Behaviour Schedule which concentrated on problem behaviours
mainly of a psychiatric nature rather than on the improvements in general
social functioning which staff felt they could see in particular co-workers over
time. Even so the final numbers were too small to measure any significant
differences.

Summary

Blackthorn Garden co-workers had a wide variety of mental health and
physical problems, the mix reflecting the project's close relationship with the
general practice and its mission to provide 'care in the community' for people
with long-term, serious and disabling mental health problems. Within the
Garden Project it was possible to find an adolescent with school phobia, a
young adult with physical disabilities and a housewife suffering from depression
working alongside a co-worker with a resistant psychosis, who had lived in an
institution for most of her life. In the first year, 23% of the co-workers had
schizophrenia or related disorders, 10% had bipolar illnesses, 23% had
depressive illnesses and 13% had neurotic disorders, the remainder having a
range of disabling illnesses. They had serious difficulties with work and social
functioning and one sixth of those with mental health problems also had
medical problems or physical disabilities. It was clear that the Garden Project
had been successful in engaging many co-workers with diverse problems and
needs including those with long-term, serious and disabling mental health
problems.


3. The Co-workers’ Views
The most important part of the research into Blackthorn Garden was finding
out what the co-workers thought of the project. Co-workers were
interviewed by the researchers at the end of the project's first year and again
at the end of the second year.

Surveys which ask people how satisfied they are with services tend to elicit high
levels of satisfaction (Lorefiee and Borus, 1984), so the interviews were
designed to elicit co-workers' perceptions, feelings and comments about
specific aspects of the Garden Project. A semi-structured interview was used
so that co-workers could be encouraged to talk freely about particular areas.
The researchers stressed that the interviews were confidential and that they
were interested in the co-workers' own views. A content analysis was made of
the responses to each question, yielding a number of categories into which
individual responses could then be placed.

In both years, almost all the co-workers expressed positive feelings about the
Garden Project. The friendly, relaxed and caring atmosphere and the sense of
community were frequently mentioned:

'It's the whole atmosphere - everybody is so cheerful and understanding, no
questions asked, no pressure.'

'Being a co-worker brings people closer together.'

'It's very free and easy - they really care about you.'

‘…you are of value and have people to share things with.'

Working in the project gave co-workers a reason for getting up and going out
of the house and provided the sense of purpose and meaning which is often
lost during chronic illnesses. One co-worker who was suffering from
depression joined because:

'...doing some hard work might spark something - because before I'd been
inactive, feeling something was missing.'


Another felt she had gained:

'...somewhere to go to, structure, a job to do and knowing I will be with other
people - it's given me my confidence back.'

While one spoke of:

‘ ...satisfaction - I feel rewarded. At the end of the day you feel you have done
something worthwhile - and then when you go home everything seems to sit in
place, everything goes right.'

A young woman who had not worked for some time appreciated the feeling of
being employed:

'It's like a little job - they pay you some money.. .so you feel you are earning
money on your own.'

In addition, the work provided a distraction from worries, depression and
troublesome psychotic symptoms. For example, one co-worker would come in
to the project when feeling 'mental anguish or despair' - and get relief from
digging the garden.

Many co-workers were proud of the Garden Project's achievements and
valued having a chance to contribute despite their illnesses or disabilities:

'...[I like] the achievement - the amazing amount that can be done by just
plugging away at it, a few at a time.'

'Its something where everyone and everything actually contributes...it doesn't
matter how bad or good you are at something provided you try.'

It was also clear that many individuals felt recognised and valued:

'It's helped me a lot - it's helped me get back my self-respect. It helps me feel
needed and (more important) useful.’


Some co-workers spontaneously commented that the Garden Project offered
things not available from hospital or existing community services:

'It gives people a sense of identity, something useful to do, helps people to
become more independent - earning money. Better than giving pills and saying
"come back in a week".'

'It's more of a family - people in hospital get discharged - you don't see them
again.'

And one saw the Garden Project as a model for community services:

'It makes you realise how much more could be done in the community if there
were more funds.'

When compared with the Garden Project, day centres and traditional work
projects were seen as less stimulating or unsatisfying:

‘There are more things to do here - more opportunities.'

'Unless there's an actual class going on at the day centre you just sit around
and here you've got something to do.'

'Work in day centres and hospitals is unrewarding and very menial.'

One woman felt that at Blackthorn:

'You are labelled a co-worker instead of a client so you feel more normal.'

Working in the Garden
Co-workers who chose to work in the garden did so for a variety of reasons.
Some enjoyed being outside, the contact with nature and watching plants grow.
One liked:

'...the peace and the quiet and seeing things develop - very therapeutic’


Another liked:

'...being out in the fresh air and feeling I'm doing something constructive and
positive.'

The changing seasons ensured variety and the garden provided a wide range of
tasks and opportunities. The work ranged from heavy physical jobs such as
digging or laying paths to light work such as propagating which could be done
by someone in a wheelchair. Some jobs could be done in groups while others
provided the chance to work alone. This was important to some of the co-
workers who preferred at times to be on their own, or who found being in
groups stressful:

'There's companionship when I want it, but there are also solitary jobs to do
when I feel the need to be alone. When I have been in an anxious or
depressed mood I have found jobs like digging a vegetable bed, planting out or
sweeping up leaves on my own to be calming.'

Some co-workers appreciated the companionship and sharing. One liked the
way:

'...everybody does their bit – the friendly atmosphere – everyone works
together.'

Another noted:

'...sometimes you don't come to do the gardening – you come for the
companionship and friendship.'

However, one woman felt lonely working in the garden and preferred the
kitchen where there were more people to chat to.

A number of co-workers preferred work in the garden to that in the kitchen
and cafe because it was less pressured and the pace was slower. One woman
recovering from a manic episode remarked:

'It's more relaxing - there's no pressure of time to finish the job and be ready
for lunch.’


Individuals were able to work at their own pace and could gradually take on
more as their functioning and confidence improved.

The main problems reported by co-workers working in the garden related to
the physical demands and to the environment when the weather was poor.
Some older individuals and those with medical problems such as arthritis found
bending, lifting and digging a problem. Other co-workers disliked the cold and
the dirt or being crowded together in the greenhouse when it was raining.
However, one woman who was not 'a mad keen gardener' and who disliked
getting her hands dirty said that she still liked to work in the garden because of
the company and sharing.

Working in the Kitchen and Café

In the kitchen, some co-workers particularly enjoyed the nature of the work
and the chance to learn how to cook and to eat what they had made:

'I like being involved with the whole process - I like working with my hands –
it's good to knead the dough and bake the bread.'

'[I like] the learning process of baking - getting one to one attention and
feeling supervised and getting to eat - proof that I've done something.'

Co-workers involved in the cooking could quickly see results and their efforts
were appreciated at lunch time by the others working in the project and by the
customers.

As in the garden, the friendly atmosphere in the kitchen was very important.
This could make up for some of the more mundane tasks which had to be
done regularly. One co-worker said:

‘I don't mind washing up - [they are] such a nice crowd to work with, they talk
to you which is what I want.'

However, some co-workers disliked particular tasks such as preparing large
quantities of vegetables or found the standing and lifting heavy pans physically
tiring.


The stresses of working in the kitchen were related to the faster pace and the
pressure to get meals ready in time. It could feel noisy and crowded and at
times a bit chaotic, the worst time being the half hour before lunch. One co-
worker remarked:

'...sometimes the pace is a bit alarming.'

One complained of:

'Too much, work for too few people, too hectic. When you are rushed off your
feet work loses its therapeutic quality and at the end of the day it becomes too
stressful.'

The kitchen seemed particularly stressful for those co-workers whose
concentration and drive were impaired and for those who were thought
disordered or experiencing hallucinations. They found it difficult to rapidly
change tasks or to take in instructions when the kitchen was busy. Another
source of stress resulted from face-to-face contact with customers (for
example when taking orders for meals or serving in the cafe) and consequently
some co-workers preferred to confine their work to the kitchen.

Being With Others

One of the main sources of stress described by co-workers wherever they
were working was being with other people. Tea-breaks and meal-times (when
co-workers, volunteers and staff would share a table), and co-workers'
meetings, were found by some to be particularly stressful.

This source of stress seemed to become more of a problem in the second year
as the number of people working in the Garden Project increased.

Other co-workers who had neurotic or personality problems found working
with people who had severe mental health problems (such as schizophrenia)
difficult. One person felt stressed:

'...when I have a co-worker with lots of difficulties working with me and I'm not
feeling too great myself.’


However, another felt that she had gained from the experience:

'I thought it would depress me to see people chronically ill, but found just the
opposite. It has been a real education for me.'

While being with others could be stressful, co-workers valued the company
and friendship and saw them as an important part of what the Garden Project
offered. Somehow a balance had to be struck between the need for social
support and the stress experienced in social situations. For particular
individuals, this equation could vary from day to day depending on their mental
health and on what was happening in the project. The staff tried to be sensitive
to this when allocating tasks and the different social environments provided by
the garden and the kitchen helped to ensure that individuals' varying needs
could be met.

Being Involved and Having a Say

Most of the co-workers appeared actively involved in the work of the Garden
Project. Not surprisingly, during the first year the majority reported needing to
ask what to do or for instructions on specific tasks. By the end of the second
year, most of those working in the garden felt that they could get on with
things by themselves, whereas in the kitchen there was a greater need for co-
ordination to ensure that meals were ready on time. A few co-workers saw
themselves as having particular responsibilities, generally for identified tasks
such as mowing the lawn or baking, but most took on whichever tasks were
allocated to them on a daily basis. For one this was a relief:

'I've come from being the one who has to have the ideas...and I'm actually
enjoying not having to take those responsibilities for the time being. I'm
responsible in so far that I see a need and don't shy away from it, but I don't
expect to have to think a week ahead.'

When co-workers were asked what they felt was expected of them in the
Garden Project, a common response was that they should do their best:

'Just give the best of what you can give.’

'Definitely that I should always have a go at whatever I am given.'


Some felt they were expected simply to turn up and to do the work:

'Work hard, get on with the job - that's it really.'

While others felt they were expected to get better, leave the project and
return to their usual roles:

'.. .get better and return to society and stand on my own two feet.'

Co-workers were also asked how much say they had in the Garden Project on
a day-to-day basis. At the end of the first year only six of the 22 co-workers
asked felt that they had a lot or quite a bit of say, while nine felt they had no or
very little say. Four said that they did not want any say. None complained that
their views (if expressed) were not heard.

When asked how they felt about this situation, 12 felt they had enough say,
while five rationalised their lack of say either in terms of their own mental
health needs or in terms of the needs of the project:

'As I grow stronger I will become more participative - putting more of me into
it.’

'You can make suggestions – I usually follow what is asked because that is
what is needed most.'

Three co-workers felt that they did not have enough say. One commented:

'I feel glad when l am consulted and I think it would be good if there was more
opportunity for co-workers to share their thoughts and ideas with staff.'

Two people said they were not bothered. One woman remarked:

‘The soldier and the sergeant – everywhere is the same – so I don't really
expect them to ask me.’

In the second year about a third of the co-workers felt they had no or very
little say in what happened in the project and again half were content with this


situation. The monthly co-workers' meetings were seen by some as a forum in
which their views could be expressed.

At the end of the second year, although individuals were gradually taking on
more responsibility, there was still a need to increase the co-workers'
opportunities to take part in day-to-day decision-making and to help to run the
Garden Project. In the first two years the underlying philosophy in Blackthorn
Garden had emphasised helping individuals to 'take charge of their own
illnesses' rather than empowering the co-workers as a group, collectively
increasing their influence and responsibilities within the project. The fact that
some of the co-workers said that they did not want more responsibility or say
in the project may have reflected their long histories of disabling illness and
previous experiences of disempowerment in mental health services. However,
it may also have resulted from the Garden Project's proximity and close
relationship to the Blackthorn Trust and General Practice - some co-workers
tending to see themselves as recipients of therapy rather than as workers and
members of a shared enterprise. The co-workers' monthly meetings and the
appointment during the second year of 'key co-workers' with particular
responsibilities for the work were first steps towards shared responsibility.

Thinking About the Future

Co-workers were asked whether anyone in the Garden Project talked to them
about how they were getting on or about the future and how they felt about
this.

Many felt they had not had the opportunity to talk on a one-to-one basis about
how things were going or what might happen in the future and that such
opportunities would be helpful. One woman said:

'Sometimes you feel life is a bit routine and to stand back and look at the
future may be a little help.’

However, a significant minority did not want to be asked about themselves or
their future:

'Sometimes you can talk and talk and just turn in on yourself.'


A few co-workers felt that the Garden Project was not the right place for such
discussions and preferred to use opportunities provided by counselling or
therapies in the Trust or to talk to their GPs.

Ten of the 23 co-workers asked at the end of the first year, and seven of 30
interviewed at the end of the second year, thought they would continue
working indefinitely in the project. One hoped to stay:

'For as long as they will have me - or if I no longer need to be there.'

One co-worker who originally lived outside Maidstone moved to the local area
as a result of the support she had received from the Garden Project.

Some planned to stay in the project for a fixed period while others hoped to
continue until their health had improved:

'For as long as I've still got problems - but (touch wood) I think I'm getting
better now.'

Some of the co-workers who were planning to move on also wanted to give
something back to the Garden Project:

'I would hope to come back – I would like to move on but it would be nice to
spend some time putting something back.'

And some hoped to maintain links with the project. One co-worker recovering
from a depressive breakdown intended to remain in contact:

'...as a person for the rest of my life. As a patient until I feel secure in what I
am going to do next.’

These co-workers saw their relationship with the Garden Project changing
from being supported by the project to contributing as volunteers and friends
themselves.

Most of those co-workers who were not planning to stay indefinitely hoped to
find paid employment or voluntary work or to move into further education.


Summary

Most co-workers were keen to talk about the Garden Project and their
personal experiences of working in it. Research interviews tend to elicit
spontaneous answers, often influenced by recent events and pressures, and
inevitably some of the co-workers' accounts were influenced by the stresses or
successes of that day or week. However, over the course of the interviews a
number of consistent themes emerged.

Co-workers valued the work and the friendly atmosphere and sense of
community provided by Blackthorn Garden. They felt valued and had a sense
of pride in the project's achievements although some would have liked more
involvement in the day-to-day decision-making. The variety of tasks available in
the garden, kitchen and cafe meant that most co-workers could find a niche
which suited them, but a number would have liked more opportunity to talk
about how they were getting on and about the future. For some being with
others was a potent source of stress, but many co-workers appreciated the
company as much as the work and a few hoped to remain in contact with the
project after leaving.

At the end of the second year interviews, co-workers were asked to spend five
minutes writing down what effect they thought the Blackthorn Garden Project
had on them. Their responses are contained in Appendix 2.


4. Integrating Community and
Primary Care
In Britain primary care involves the early detection and treatment of illness
combined with primary prevention such as immunisation and health education.
In addition, GPs and primary health care teams provide continuity of care for
individuals and families. This continued commitment and their knowledge of
individuals' circumstances and local communities enables GPs and primary
health care teams to take a developmental and holistic view of their patients
and the problems they bring.

General practice has always played an important part in the care of people
with chronic illnesses, including those with disabling mental health problems.
Some GPs have identified the particular challenges in working with this group -
including feelings of impotence and frustration when therapists are faced with
problems for which there is no 'cure' (O'Dowd, 1988). Constructive ways of
supporting such patients often include moving from a purely medical to a
holistic model and sharing care with other members of the primary health care
team.

The move towards 'care in the community' means that GPs will be increasingly
involved in supporting people with mental health problems who would have
been cared for in hospital. These include people with acute or episodic
disorders and those with severe and disabling illnesses (mainly schizophrenia)
who have been treated in hospital for many years. The resettlement of this
latter group of 'long-stay patients' is likely to increase the work-load and
responsibilities of GPs and primary health care teams. Although the actual
numbers of former 'long-stay patients' joining each GP's list may be very small
they are a profoundly disabled group with extensive and continuing needs for
services.

Managing Mental Health Problems in Primary Care

The part played by GPs in detecting and treating psychological problems has
been well documented. In Britain, 98% of the population are registered with a
GP and 60 - 70% consult their GP in any year. It has been reported that 14% of
those who consult in a year do so for problems diagnosed by GPs as largely


psychological in origin (Shepherd et al., 1966) while a further 10 -12% may have
mental health problems which are not detected by their GPs (Goldberg and
Blackwell, 1970) - although there is considerable variation between different
surveys. The extent to which problems are labelled as 'psychological' varies
greatly amongst GPs (Shepherd et al., 1966) and may relate to the
characteristics of the doctor, the type of patient and perhaps to the resources
available to deal with psychological distress. Most people diagnosed as having
mental health problems are treated in the primary care setting, only 5.5% being
referred to the secondary mental health services (HMSO, 1979).

Although psychiatrists sometimes assume otherwise, GPs have always played
an important part in supporting people with long-term and disabling mental
health problems, many of whom have always lived 'in the community'. Surveys
of primary care patients have found that approximately 7% had mental health
problems lasting longer man one year and just under a quarter of these were
severely disabled (Shepherd et al., 1966; Regier et al., 1985). A study of people
with schizophrenia who had been discharged from hospital found that five
years after discharge 24% were only in contact with their GP (Johnstone et al.,
1984). Similarly, Melzer et al., (1991) following people with schizophrenia
during their first year after discharge from St Thomas' Hospital, found that GPs
were the professionals with whom they were most likely to be in contact.

How does having people with long-term mental health problems on their list
affect the workload of GPs? A survey of 13 general practices in London has
shown that patients with schizophrenia consulted their GP more often than
the 'average' patient but with similar frequency to those with chronic physical
disorders. Patients with schizophrenia also presented more often with physical
complaints than the average patient (Nazareth et al., 1993). The poor physical
health of people with long-term mental health problems (Brugha et al., 1989)
may lead to GPs concentrating on physical problems rather than actively
managing the mental illness. A survey of GPs in the South-West Thames
Region found that only nine out of 369 respondents had specific practice
policies for looking after patients with long-term mental health problems and
287 felt that such patients only came to their attention when there was a crisis
(Kendrick et al.,1991).


A 'Keystone of Community Psychiatry'?

The World Health Organisation Working Group on Psychiatry and Medical
Care (1973) identified the primary medical care team as 'the keystone of
community psychiatry'. 12 years later, the House of Commons Social Services
Committee (1985) reported that 'Community Care depends to a large extent
on the continuing capacity of GPs to provide primary medical care to mentally
disabled people'. In 1992, one of the three mental health targets of The Health
of the Nation (Secretary of State for Health, 1992) was 'to improve significantly
the health and social functioning of mentally ill people' - a target which needs
to be addressed by both primary and secondary care services.

The World Health Organisation have outlined reasons why GPs are well
placed to provide primary care for mental illness (WHO, 1973). These include
the tendencies of physical and mental illnesses to co-exist and for many people
with mental health problems to present with physical complaints and not to
consider themselves to have psychological problems. Many psychological
disorders are related to family and social difficulties which are often known to
GPs and GPs are able to provide long-term support without frequent changes
of personnel.

However, providing care for people with long-term and disabling mental health
problems in general practice presents some particular problems. Such patients
require input from a number of sources combined with regular assessment of
their needs. They are heavily dependent on specialist services such as day care
or residential care to enable them to remain out of hospital and the GP's
contact with such services may be limited. Although these patients may present
to GPs for physical health problems or in crises, such consultations do not
provide good opportunities for coordinating overall care. Furthermore, they
may be 'lost to follow-up', and the 'demand-led' nature of general practice does
not easily adapt to the 'assertive outreach' needed to prevent deterioration
(Tantam and Goldberg, 1991).

Hence as 'care in the community' develops, primary and secondary mental
health services need to find new ways of working together aimed at those with
long-term disabling mental health problems so that this vulnerable (and
historically deprived) group receives appropriate care.


What are the Risks of Combining Community Care
with Primary Care?

One of the concerns about setting up community care projects in primary care
settings is the risk that they may gradually cease to focus on those whom they
were set up to target. For example, projects set up to provide a service for
people with serious mental health problems may come to concentrate on the
much larger population with self-limiting disorders found within general
practice. One example of this problem has arisen with the increasing tendency
to link community psychiatric nurses (CPNs) to primary care. Approximately
half the referrals to CPNs now come directly from GPs. Although the CPN
service originally developed to enable people with severe mental health
problems to live in the community, those attached to primary care are tending
to work with a less disabled group - who often have neurotic problems (Wooff
et al., 1983; White, 1990). The benefits of CPN input to those with neurotic
disorders remain uncertain (e.g. Gournay and Brooking, 1992) and this trend
inevitably reduces the service available for the severely mentally ill.

A second way in which resources within primary care may be directed towards
those with less severe mental health problems is the increasing employment of
counsellors within general practice. A third of general practices within England
and Wales now have a dedicated counsellor (Sibbald et al., 1993) as do nearly
half of all fundholding practices (BMJ, 1994). However, the expansion of
counselling services within primary care has occurred largely without
evaluation of the efficacy and cost-effectiveness of such a service (King, 1994).
Again this raises concerns as to whether resources for community care
diverted to primary care settings will be used appropriately for those with
severe and disabling disorders.

The advent of fundholding in general practice increases the opportunity for
developing appropriate local services but also the risk that the needs of certain
groups maybe forgotten. Since April 1993, GP fundholders have been able to
purchase community and outpatient mental health services and services for
people with learning disabilities. Concern has been expressed that fundholders
may buy specialist mental health services for people who have traditionally
been treated effectively within primary care while failing to make provision for
people with schizophrenia and other disabling conditions. This is despite
guidance from the National Health Service Management Executive that with


the extension of GP fundholding in April 1993, skilled psychiatric care should
be concentrated on the more severely mentally ill (NHSME, 1992).

One way of avoiding this problem is to ensure that fundholders are aware of
the needs of people with long-term and severe mental health problems and the
effectiveness of services targeting them, as well as their obligation as
purchasers to contribute to the targets of the Health of the Nation. Liaison
between primary care and secondary mental health services, and between GPs,
Family Health Services Authorities and District Health Authorities will help to
ensure a balance between the needs of practice populations and the needs of
small groups with serious or disabling conditions who require special care. GPs
and primary health care teams will also need to develop specific policies for
identifying and supporting people with long-term mental health problems on
their practice lists.

New Approaches to Integrating Primary and
Community Care

The traditional approach to integrating primary care and secondary mental
health services has been for psychiatrists and other mental health workers to
visit general practices – holding clinics or providing advice. However, a few
general practices have developed services aimed at people with long-term
disabling mental health problems from within the practice, rather than
importing professionals from other services.

A 'case-manager' in primary care
One approach to ensuring that people with long-term disabling mental health
problems receive appropriate continuing care was developed by a Streatham
Vale general practice with approximately 8,000 patients.

(Cohen, 1992) They employed a 'case-manager' within the primary health care
team to identify people with long-term disabling mental health problems on the
practice list, assess their functioning and co-ordinate the various services
needed to 'maximise their functioning and sense of well-being in the
community'. This meant addressing needs such as accommodation and
employment as well as mental health, physical problems and medication. The
'case-manager' employed was trained as a community psychiatric nurse, had a
diploma in counselling and some social work experience. To ensure that her


work did not 'drift away' from people with long-term mental health problems
her contract of employment specified this target group only. The post was set
up as an integral part of the primary health care team and the practice (now
fundholding) received 70% reimbursement for the cost of the salary from the
Family Health Services Authority.

Blackthorn Garden - A community project linked to primary care
Blackthorn Garden represents an even more ambitious attempt to integrate
the care of people with long-term mental health problems within primary care.
It provides a continuing source of rehabilitation and support for people with
chronic mental and physical problems, and it was probably the first work
project for people with such problems to be created in a primary care setting.

The development of the community care project alongside the Blackthorn
General Practice and Trust appeared to increase the social opportunities and
status of those using the project. Co-workers and 'volunteers' working in the
Garden Project had a variety of strengths as well as of problems and needs -
providing many opportunities for mutual understanding and support. They had
daily contact with other members of the local community who used the
general practice, garden and cafe. The location of the Garden Project on the
same site as the (highly valued) Blackthorn Medical Centre helped to reduce
the stigma attached to mental health problems - and symbolised the permeable
boundaries of the Garden Project and the Trust. People with psychological
problems who normally would not consider referral to the psychiatric services
could be persuaded to visit the Garden Project and often to join in. Similarly,
for people who tended to 'somatise' their problems, joining the Garden
Project did not mean accepting a mental health label as not everyone working
there had psychological needs.

The close relationship between the Garden Project and the general practice
seemed also to benefit co-workers' families. When mental health care is
transferred from hospital to community settings, families may have to play a
greater part in supporting relatives with mental health problems who would
previously have been admitted for treatment. At Blackthorn, families appeared
to appreciate the proximity of the project and the possibility of keeping closely
in touch with GPs and project staff. Several members of a family (with or
without identified needs) might be involved in activities in the Garden Project


or the Trust - enabling a form of sharing and identification not usually possible
in mental health services.

Staff in the Garden Project reported a number of benefits from working closely
with the primary health care team and the therapists working in the Trust.
Weekly meetings with the GPs and therapists provided a forum in which
different views of the co-workers/patients could be shared. Co-workers' needs
could be addressed from a variety of perspectives including emotional,
biographical, social and nutritional. GPs could help the Garden Project staff to
understand the positive and negative symptoms experienced by co-workers
with schizophrenia and the side-effects of medication. Creative therapists could
supply new insights into working with people who did not seem to improve
with conventional techniques. The project workers could provide feedback on
how co-workers were developing in the project. If a crisis occurred the
project staff knew that a quick response could be obtained from the GPs - who
could in turn alert the mental health services - and this helped them to create
a containing atmosphere for individuals who were distressed and disturbed by
their symptoms.

The four GPs also appreciated the relationship between the Blackthorn
Garden Project Trust and General Practice. The weekly meetings and the GPs
roles as Medical Officers to the Trust and Garden Project ensured good
communication. There was regular feedback and discussion of co-workers and
GPs were informed if co-workers failed to turn up. They could liaise with the
GPs of co-workers referred from other practices - for example, to suggest
changes in medication. There was appreciation of the team approach in
working with people with chronic and disabling problems - a process described
by one of the GPs as 'piecing a puzzle together to see how people could be
helped'. One GP felt that he had learnt to focus primarily on the person and
only secondarily on the illness. Another found it encouraging to see people
with chronic health problems doing something useful and taking pride in their
work.

At Blackthorn, the combination of the creative therapies and the general
practice arose from the need to find new ways of working with and sharing the
burden of chronic illnesses resistant to medical treatments. However, although
the Garden Project shared the care of people on the practice list who had
long-term disabling problems, it also attracted new referrals from psychiatrists

The Blackthorn Garden Project - Centre for Mental Health

The Blackthorn Garden Project - Centre for Mental Health

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