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The Blackthorn Garden Project - Centre for Mental Health

  1. 1. The Blackthorn Garden Project Community Care in the context of Primary Care 1995Julia 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
  2. 2. The Blackthorn Garden Project 2 © The Sainsbury Centre for Mental Health, 1995The Blackthorn Garden ProjectCommunity Care in the Context of Primary CareBy Julia Nehring and Robert Gareth Hill© The Sainsbury Centre for Mental Health 1995All rights reserved. No part of this publication may be reproduced, stored in aretrieval system, or transmitted in any form or by any means, electronic, mechanical,photo-copying, recording or otherwise without the prior permission of thepublisher.ISBN: 1 870480 20 1Published byThe Sainsbury Centre for Mental Health134 -138 Borough High StreetLondonSE11LB0171 403 8790
  3. 3. The Blackthorn Garden Project 3 © The Sainsbury Centre for Mental Health, 1995Table 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
  4. 4. The Blackthorn Garden Project 4 © The Sainsbury Centre for Mental Health, 1995AcknowledgementsThe researchers wish to thank the co-workers, volunteers and staff ofBlackthorn Garden and the general practitioners and therapists working in theBlackthorn Medical Centre and Trust. We also wish to thank Orly Klein,researcher at The Sainsbury Centre for Mental Health for interviewingagencies referring people to the Garden Project.The study was funded by grants from the Gatsby Trust Charitable Foundationand from the South-East Thames Primary Care Development Fund.
  5. 5. The Blackthorn Garden Project 5 © The Sainsbury Centre for Mental Health, 1995Blackthorn Garden – A GP’sperspectiveAs students one took up medicine in part at least to fulfill ideals of helpingones fellow man. A few years as a GP however confirm that some patientsproblems are too complex and ingrained to be altered much by ones limitedtraining, 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 ofones inadequacy. The numbers now in the community for whom the GP hasclinical responsibility and their frequent attendance can have significant impacton the morale of doctors and the practice team. Their demands can encouragenegative and unloving behaviour (impatience, irritation, cant be bothered; ofwhich one is duly ashamed), simply because the problems they bring are toogreat and one knows from experience that ones concerted effort even overlong periods brings little return.Modern medicine lays heavy emphasis on treating disease while unwittinglyleaving the patient himself on the sidelines. For long-term mental healthproblems this will simply not do. Promises of a cure are not forthcoming andthese illnesses are on the increase.A co-ordinated service is called for which addresses the needs of eachindividual and draws on his aspirations, talents and effort. This can be achievedby a working community like Blackthorn which also strives to understand andimprove the human condition in illness.Working at Blackthorn is an uplifting experience. The sense of communitycreated by staff and co-workers alike lightens ones load. The burdens of theday can be shared be it with an illness like schizophrenia or the apparentlytedious refrain of ones usual workload. One can bear to look at such icebergsonly when the means to tackle them is close at hand.Morale runs high in the Garden because things seem possible which didntbefore. Warmth, understanding and a sense of belonging for individuals whohad 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
  6. 6. The Blackthorn Garden Project 6 © The Sainsbury Centre for Mental Health, 1995of services and produce available to the general public who frequent theGarden leads to much genuine appreciation and gratitude raising confidenceand self-respect amongst co-workers. One is freer to concentrate on medicalaspects while others in the circle can make better use than before of onescontribution. In between times, the social life that fills the Cafe and surroundsthe washing up bowl enlivens the days routine with laughter and camaraderie.Contact with patients, co-workers, families, colleagues and health professionalsboth in and relating to the practice is positive because one is in a position tooffer help. Doors that used to feel closed feel more open, at least in that nowone has the means to try.Everyone understands that numbers have to be limited, that this primary careproject is an experimental model. We are now privileged to be working withThe Kings Fund, London, and four other practices in Bristol, ParkwoodMaidstone, Shrewsbury and Stroud, to demonstrate over the next 3 years thatBlackthorn Medical Centre and Garden is indeed a replicable model. Thiswould not have been possible without the substantial help we have receivedfrom The Primary Care Development Fund and The Sainsbury Centre forMental Health.David McGavin26.11.94
  7. 7. The Blackthorn Garden Project 7 © The Sainsbury Centre for Mental Health, 19951. The Blackthorn Garden ProjectIntroductionBlackthorn Garden is a community care project for people with long-termmental health problems and other chronic or disabling illnesses. Unlike mostcommunity care projects, it is based in a primary care setting. It developedfrom an initiative the Blackthorn Trusf, pioneered by an NHS general practicein Maidstone. The Trust was set up to work in conjunction with the generalpractice to provide anthroposophical creative therapies (art therapy, musictherapy and eurythmy therapy), counselling and support groups to patientsreferred 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 creativetherapies together with mainstream medical treatments and anthroposophicalremedies prescribed by the general practitioners. The work of the BlackthornTrust and the theoretical basis underlying it (anthroposophy) are described inAppendix 1.The Blackthorn Trust and General Practice embarked on a new project - theBlackthorn Garden - in September 1991, following approaches from Healthand Social Services who were looking for opportunities to develop care in thecommunity. The aim was to create a supportive work environment in thecommunity for people with long-term mental health problems. The capitalfunding for the new project was provided by Health and Social Services,charitable foundations and local companies. Researchers from RDP (now TheSainsbury Centre for Mental Health) were invited to evaluate the first twoyears of the project as part of a larger study of work projects for people withlong-term mental health problems. The study was supported by funding fromthe Gatsby Trust Charitable Foundation and from the South-East ThamesPrimary Care Development Fund.This report and a previous publication Work, Empowerment and Community(Nehring et al., 1993) describe the development of the Blackthorn GardenProject during its first two years (January 1992 - December 1993). Althoughthe project has a number of unique features, we describe it mainly as a modelwhich illustrates how the community care of people with mental health
  8. 8. The Blackthorn Garden Project 8 © The Sainsbury Centre for Mental Health, 1995problems can be integrated with primary care. The evaluation has ended, butof 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 GardenThe Blackthorn Garden Project was set up at the end of 1991 on land adjacentto a new medical centre which had been built for the Blackthorn Trust andGeneral Practice. Its aim is to provide work rehabilitation and communitysupport for people with mental health problems, particularly those who aredisabled by their illnesses and who have not responded to other treatments.Such individuals, referred from the Blackthorn Medical Centre, by other GPsand by psychiatrists, are taken into the project as co-workers. They workalongside 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 bythe end of the year, 31 had joined and 25 were still involved. By Autumn 1993the 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 and50 co-workers were working in the project each week. There were fourmembers of staff: the Director, the Garden Project Leader, the Bakery ProjectLeader 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-
  9. 9. The Blackthorn Garden Project 9 © The Sainsbury Centre for Mental Health, 1995 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 thesense of meaning and purpose which many co-workers have lost in the courseof their chronic and disabling illnesses. There are opportunities to take onvalued roles, develop skills and build confidence and self-esteem. Workprovides the structure through which all the other elements function. Forexample, the working day at Blackthorn is punctuated by shared meals andbreaks which offer opportunities for social interaction. Twice a week co-workers, volunteers and staff take time off work as a group for eurythmy andcraft sessions. Some co-workers also receive other creative therapies orcounselling while working in the project. However, in contrast to theremainder of the Trust, the opportunity to work is the main thing which bringspeople to Blackthorn Garden.The kitchen and cafeThe main work areas in Blackthorn Garden are the kitchen and cafe, and thegarden itself. The well-equipped kitchen and cafe are located in an attractivewooden building in the centre of the garden, a short distance from theBlackthorn Medical Centre. The cafe is used by the general public, patients ofthe general practice and Trust, co-workers, staff and volunteers. Two staffwork in the kitchen helping co-workers and volunteers to prepare food for thecafe and to bake bread for sale. The food is of a high standard and wherepossible is prepared using organic produce grown by ‘biodynamic methods.It is hoped that high quality food will help to improve the health of thoseworking in the project. Co-workers are involved in planning and preparingmeals, serving customers, selling bread, biscuits and cakes, washing up and
  10. 10. The Blackthorn Garden Project 10 © The Sainsbury Centre for Mental Health, 1995clearing away. Different co-workers take on different tasks, some find workingin the kitchen less stressful than serving customers in the cafe.The gardenMuch of the produce used in the kitchen comes from the garden wherevegetables, herbs, fruit and flowers are grown. The biodynamic method (ananthroposophical organic and ecological approach) is used. A number of co-workers choose to work solely in the garden, some because they enjoyworking 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 todigging and making compost- some of which can be done alone and others inpairs or small groups. This wide range of tasks enables individuals with differentphysical or emotional problems to find a niche which suits them.The Social Environment - Creating CommunityThe social environment at Blackthorn is strongly influenced by theanthroposophical approach. This approach has led not only to new ways ofworking in medicine but also to social developments in education and forpeople with special needs. For example, Steiner (Waldorf) schools use aneducational 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 ofspecial care, aim to recognise the unique human potential of each child.Camphill village communities (developed as intentionally created communitiesfor adults) attempt to be both communities with and not for the person withspecial needs, and to stand in the mainstream of modern life, not withdrawingfrom it. In the Camphill villages adults with special needs live with families andothers and are able to make a contribution to the work and social life of thevillage communities.In Blackthorn Garden, the Camphill philosophy of being a community with andnot for people with long-term mental health problems is extremely important.It is for this reason that individuals are regarded and known as co-workersrather than as patients or clients. The researchers found a strong sense offriendship and community and of mutual support. This was remarked on by anumber of the co-workers:
  11. 11. The Blackthorn Garden Project 11 © The Sainsbury Centre for Mental Health, 1995 I like the coming together of it - everybody seems to know everybody else and makes a point of getting to know you - theres 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 createdcommunity, does not function in isolation away from the mainstream ofmodem life. Co-workers are encouraged to make and retain links with peopleand organisations outside. At the community level, the project both engagesmembers of the local community in its work and provides services and facilitiesof use to them. Patients of the general practice and Trust, and local peoplecome 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 inthe Trusts own charity shop. Open days, talks and social evenings enable localpeople to learn more about the work of the Garden Project and Trust. Aregular newsletter keeps the local and wider community in touch with eventsat Blackthorn and helps to encourage a sense of ownership and involvement.Mental Health and Community Care - Forging LinksEducating health professionals about complementary medicine has always beenpart of the programme of the Blackthorn Trust. Even before the GardenProject was established, seminars were held for doctors and other healthprofessionals who wanted to find out more about the Trusts work. Topicsincluded Learning with the Dying, Patients as Pioneers and Depressive Illness- Working for Positive Change. GP trainees and those studying counselling, artand music therapy have been attached to the general practice and the Trust.The Garden Project attracts visitors interested in the role of work andgardening in rehabilitating and supporting people with mental health problems.In addition to its educational role, Blackthorn Garden aims to work with thoseconcerned with mental health and community care. To this end links have beenestablished with local psychiatric teams, day centres, hostels and other
  12. 12. The Blackthorn Garden Project 12 © The Sainsbury Centre for Mental Health, 1995providers of community services. Part of the Directors role is to ensure goodcommunication and collaboration with other agencies, including Social Servicesand the Maidstone Priority Care NHS Trust. Blackthorn Garden has alsodeveloped links with other anthroposophical projects including a Camphillcommunity in Bristol which specialises in working with people with long-termmental health problems and with two residential anthroposophical clinics.Blackthorn Garden StaffAt the start of 1992 Blackthorn Garden had just two paid staff - the Directorand the Horticultural Project Leader. In April 1992 a Master Baker wasemployed to lead the work in the developing bakery and cafe. In October1992, following a steady increase in customers, one of the volunteers wasrecruited as a part-time member of staff to co-ordinate the running of the cafe.In addition, the Garden Project received administrative support from theBlackthorn Medical Centre and two sessions a week from the Trust ArtTherapist 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 inprimary care. The Director had a background in company law, had worked as amanagement consultant specialising in social change and had taught in theCentre for Social Development at Emerson College. The Horticultural ProjectLeader had horticultural training, had worked as a gardener and had developedand managed a gardening project for people with learning difficulties. The BakeryProject Leader was a Master Baker, had worked in a biodynamic bakery and hadbeen a director of a residential farm for people with mental health problems. TheCafe Co-ordinator had been a patient of the Trust who had gone on to become avolunteer in the Garden Project. The Director and the Baker had previousexperience of the anthroposophical approach.During 1992 and 1993, the researchers talked to Blackthorn Garden staff about theirperceptions of the Garden Project and their experiences of working there. The stafffelt 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 hopedthat the co-workers would gradually become stronger, more independent and moreable to cope with their chronic illnesses. One staff member felt that coming toBlackthorn Garden gave co-workers:
  13. 13. The Blackthorn Garden Project 13 © The Sainsbury Centre for Mental Health, 1995 ...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 theproject. One staff member, asked what the co-workers had done in the previousweek, 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 BlackthornGarden staff. They had to ensure a balance between the practical tasks, commercialpressures and the supportive and therapeutic aspects of the Garden Project. Theyhad to organise a range of tasks in their own areas and decide on the days workwith each co-worker and volunteer. They had to be flexible and able to adapt andimprovise when co-workers failed to turn up, arrived late or needed time out. Thislack of predictability posed particular problems for the cafe and bakery because ofthe need to serve customers and to produce bread for sale. Staff had to learn bothto work alongside co-workers and to stand back and enable co-workers to functionat their own pace despite the external pressures. Even so, it was difficult to listenout for problems as well as getting the work done. In practice, staff working in thecafe, 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 theProject Director and the GPs. Nevertheless, they had to be constantly available toco-workers, volunteers and customers while somehow maintaining the rhythm andmomentum of the work.This need to be constantly available was a source of stress - as was the erraticattendance of some of the co-workers and their slow progress and fluctuating mentalhealth. The weekly staff meetings with the Project Director and one of the GPshelped 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 responsibilitiesincluding 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 andcreative therapists. He liaised with individuals and agencies outside the project,particularly with the local mental health services. He counselled individual co-
  14. 14. The Blackthorn Garden Project 14 © The Sainsbury Centre for Mental Health, 1995workers and kept in touch with their families and with what was happening in theirlives. 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 theGarden Project and in supporting the volunteers and staff. Like the other staffmembers, the Director felt under pressure to be constantly available and had torapidly switch his attention between competing areas.Blackthorn Garden VolunteersVolunteers 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 theTrust. Volunteers also play an important part in Blackthorn Garden, supporting thework of the project and forming part of the community.Volunteers were involved from the start of the Garden Project and by autumn 1993eight were coming regularly on a part-time basis. They came mainly from the localcommunity and nearly all were or had been patients of the Trust, although onehad become involved as a result of an interest in anthroposophy andbiodynamic gardening. Volunteers worked alongside the staff and co-workersand some took on particular responsibilities, one later being employed as thejoint co-ordinator of the cafe. Like the staff they had to be flexible and willingto adapt when co-workers failed to turn up or needed time-out or support.The volunteers themselves also needed support and some commented thatwhen they were going through difficult times they were helped by others in theproject. One particularly appreciated the support she had received from theProject Director following a bereavement.Some of the volunteers initially found relating to co-workers with disablingmental health problems difficult and felt they gained some understanding fromthe experience of working alongside them. One remarked: It was very hard to start with...I didnt quite understand. It has given me insight into the problems there are - and that so many people dont want to know. Its given me a deeper understanding into the problems...and its not always easy.
  15. 15. The Blackthorn Garden Project 15 © The Sainsbury Centre for Mental Health, 1995FundingCapital costs and fundingThe capital cost of the Blackthorn Garden Project was £84,000. This includedthe costs of rebuilding and refurbishing the wooden building which housed thekitchen and bakery, cafe, activity room and offices, equipping the kitchen andbakery, and furnishing the cafe and offices. These costs were met by £15,000from Maidstone District Health Authority and £41,000 raised from charitabletrusts and companies, supplemented by £28,000 from the first yearss grant.Revenue funding and running costsThe District Health Authority and Kent County Council Social Services agreedto support the Garden Project with Joint Funding of £56,000 a year (to beincreased in line with inflation) for seven years from April 1991. During thestudy period, funding was also obtained from the South-East Thames RegionalHealth Authority Primary Care Development Fund, the Mental Health Foundationand 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 ProjectLeaders, the part-time Cafe Co-ordinator, tihe Director who worked four days aweek, the Administrator from the Medical Centre who worked one day a week andthe Trusts Art Therapist who worked one day a week. The Garden Project offered75 places per week to co-workers.During 1993 funding for salaries (£81,000), gas and electricity (£5,500), buildingmaintenance and equipment (£5,000), and other overheads (£3,000) came from JointFunding (£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 TheSainsbury Centres study. In addition, the sales of produce and refreshments in thecafe generated £31,000. Of this £15,500 was spent on supplies for the garden andprovisions 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 tosecure continuing and adequate funding.
  16. 16. The Blackthorn Garden Project 16 © The Sainsbury Centre for Mental Health, 1995Blackthorn Garden as a Developing ProjectDuring the two years of the study, Blackthorn Garden was in every sense adeveloping project. Starting with only a handful of co-workers at the beginningof 1992, work initially centred around developing the vegetable garden andnursery from a neglected site, while an old wooden building was converted tohouse the bakery, cafe, activity room and offices. At this stage a greenhouseprovided the only shelter for co-workers, while the Directors office was agarden shed. As the refurbishment of the cafe progressed, the Bakery ProjectLeader worked with co-workers and volunteers producing trial batches ofbread and meals for those in the project and a few visitors. The cafe officiallyopened to visitors in August 1992 and the work gradually expanded until bythe 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 daysin the garden, bakery or cafe. On average co-workers attended 74% of theircontracted time during the first year, with only three working less than 50%of their contracted time, while five worked more than their agreed sessions. Inthe second year, even more co-workers came regularly to the project, themean attendance being 89% of contracted time. Initially the co-workers wereunpaid, but from October 1992, as income from the cafe and the sales of breadand produce increased, they were given a share of the takings. Every month aproportion 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 affecttheir benefits), and a fund for outings.Blackthorn Garden staff valued being part of an evolving project, but workingin a new and developing project required a high degree of adaptability. In thefirst year the Garden Project was being built in a very concrete sense - theland was cleared, the hut refurbished, equipment bought and the kitchen andbakery set up. At this stage the emphasis was on acquiring the materialsneeded for the nursery, cafe and bakery to operate. However, the projectsrole in providing community care and work rehabilitation was not on holduntil all the resources were available - co-workers, volunteers and members ofthe community were involved in building the Garden Project right from thestart. In the second year, the emphasis moved to organising the work areasand establishing work routines and consolidating some of the informal
  17. 17. The Blackthorn Garden Project 17 © The Sainsbury Centre for Mental Health, 1995processes which had emerged in the first year. During this period the Directorconcentrated on making links and building up relationships with other mentalhealth services and on co-ordinating the various professionals working withindividual co-workers. At the end of the busy second year, many of the workroutines and links were in place and staff hoped that the next stage wouldallow them to focus more on the individual needs of the co-workers in theirwork areas.A frequent concern in work-based rehabilitation projects is the potential fortension between therapeutic aims and commercial demands (e.g. see Nehringet al., 1993). For example, the Horticultural Project Leader was torn betweenthe needs of the co-workers for support and supervision and the necessity ofkeeping 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 asthe number of co-workers working in the garden. To some extent thisdilemma was lessened at the end of the second year by the establishment ofkey co-workers to supervise particular areas of work (for example, thevegetable garden, landscaping a new area, or preparing produce for sale). Thissharing of responsibility for the running of the garden enabled the HorticulturalProject Leader to move from a position of leading to one of supporting anddelegating and meant that he could respond more flexibly to individual needs.Similarly, in the cafe and bakery there were tensions between the need to getthrough the tasks, produce high quality food and to make a profit, and theneed to spend sufficient time with individual co-workers. Tensions betweenthe therapeutic and commercial aims of Blackthorn Garden existed and werementioned by co-workers, but they appeared to be balanced by the verystrong 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, moreable to trust and more ready to take on responsibility. The warm andaccepting atmosphere enabled them to gradually build on their existingstrengths 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 mutualsupport, more discussion in the co-workers meetings, and social events andoutings were well attended.
  18. 18. The Blackthorn Garden Project 18 © The Sainsbury Centre for Mental Health, 1995However compared to the rapid development of the Garden Project, thechanges in the co-workers occurred very gradually - particularly in those withlong-term and disabling mental health problems. Psychiatric symptoms oftenremained and none moved quickly into work or open employment. Staff had tolearn to accept the reality of this slow progress and to reconsider what theiraims should be in working with this group.SummaryBlackthorn Garden is a primary care project which offers work, rehabilitationand community support for people with long-term mental health problems andother disabling conditions. The project developed rapidly during its first twoyears and co-workers, volunteers and members of the local community wereinvolved from the start. It works closely with the Blackthorn General Practiceand Trust and has made links with local mental health services. The cafe,bakery and garden function as valuable resources for local people and patientsof the Blackthorn Medical Centre. The Garden Project shows how thecommunity care of people with mental health problems can be integrated withprimary care and local communities.
  19. 19. The Blackthorn Garden Project 19 © The Sainsbury Centre for Mental Health, 19952. The Co-workersBlackthorn Garden was set up to be both a community care and a primarycare project. Hence it was expected that the project would take on co-workers with a wide variety of problems and needs, but that the majoritywould fall into two main groups.The first of these groups consisted of people with long-term and severe mentalhealth problems such as schizophrenia and bipolar (manic depressive) illness.Schizophrenia is characterised by psychotic experiences such as delusions andhallucinations, by disordered thinking and by negative symptoms such as socialwithdrawal, underactivity and lack of drive. These symptoms are frequentlyaccompanied by profound disturbances in social functioning including loss ofself-care and social skills, social isolation and the inability to gain or to holddown employment. Bipolar illnesses may be accompanied by psychoticsymptoms but are characterised by fluctuating and disabling mood swings,which also result in considerable disruption to jobs and relationships. Peoplewith these types of problems often spend long periods in hospital or insheltered accommodation, or require intensive support from their families.With the closure of the large psychiatric hospitals, there is a need to developnew resources to support people with such long-term and disabling mentalhealth problems in community settings. The planned closure of OakwoodHospital in Maidstone was one of the reasons Health and Social Servicesinvited the Blackthorn Trust to set up a community work project for peoplewith mental health problems.The second group the Garden Project aimed to engage were people withchronic neurotic or personality difficulties who are often mainly supported byGPs. These include people with anxiety or depressive disorders which may berelated to physical illnesses, family problems or social circumstances. Thosewith personality disorders have long-standing problems which prevent themfunctioning effectively in many areas of their lives and in some cases lead toself-harm. Others with chronic physical illnesses or disabilities suffer lowmorale, poor confidence and low self-esteem as a result of problems which canbe helped little by medical treatments. It was hoped that the BlackthornGarden Project would improve such peoples coping abilities and the quality oftheir lives by providing them with social support and a sense of purpose.
  20. 20. The Blackthorn Garden Project 20 © The Sainsbury Centre for Mental Health, 1995One 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 acombination of questionnaires, rating scales and (where co-workers gavepermission) information from project staff and from medical notes. Co-workers who started in 1992 were assessed during their first month in theproject.Co-workers in the First YearDuring the first year, 15 men (48.4%) and 16 women (51.6%) joined theGarden Project, their ages ranging from 15 to 61 years (average 35.8). All werewhite 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%) withpartners, 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%) livedalone.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) wherethey were inpatients. Another was an inpatient in an anthroposophical clinic,having been transferred from a London psychiatric hospital. One had beenreferred from a local group home and a 15 year old boy by his school. Threepeople had heard about the Trust and referred themselves directly. Six (20.4%)of the co-workers lived outside Maidstone in Kent or South London andtravelled considerable distances to get to the project.DiagnosesEach co-worker was given a diagnosis by the research psychiatrist using ICD10 criteria (WHO, 1992). Seven (22.6%) had schizophrenia, schizoaffectivedisorder or delusional disorder. Three (9.7%) had bipolar illnesses, two beingcurrently depressed and one in remission. Seven (22.6%) had depressiveillnesses, one following treatment for cancer with metastatic spread. Four
  21. 21. The Blackthorn Garden Project 21 © The Sainsbury Centre for Mental Health, 1995(12.9%) had neurotic disorders including anxiety, obsessional compulsivedisorder and school phobia; one of this group had been treated for cancer.Three (9.7%) were given a primary diagnosis of personality disorder (two beinglabelled anxious/avoidant and one emotionally unstable). Two (6.5%) had aprimary diagnosis of mild learning difficulty, one having significant behaviouralproblems.Of the remaining co-workers, one had an organic amnesia following a headinjury, one had Gilles de la Tourettes syndrome complicated by behaviouralproblems, one had benzodiazepine withdrawal syndrome following asupervised attempt to come off benzodiazepines, one was dependent onalcohol and one was physically disabled by post-traumatic dystonia.Five co-workers had physical disabilities or significant medical conditions aswell as mental health problems, including cerebral palsy and late-onset asthma.Use of mental health servicesCo-workers were asked about their previous use of mental health services. 25(77.4%) reported some contact with the mental health services, the averageage of referral being 22 years 10 months (range 13-42 years).The average length of time since first contact with the psychiatric services was18 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 psychiatrictreatment. 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 years8 months, median 6.0 months). When the admission of 27 years was excludedthen 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 pastand these included day hospitals, day centres, sheltered work facilities anddrop-in or social clubs.Four (12.9%) of the co-workers were receiving inpatient treatment whileattending the Garden Project. Of the remainder seven co-workers (26.9%) hadseen their psychiatrist in the previous three months, two (7.7%) were alsosupported by community psychiatric nurses and two were attending a depotclinic. Four (12.9%) had seen a social worker in the previous three months.
  22. 22. The Blackthorn Garden Project 22 © The Sainsbury Centre for Mental Health, 1995Use of primary care services21 (70.0%) of the co-workers had seen their general practitioner in theprevious three months and one received support from a general practicenurse. Three (10.0%) had received counselling provided by the Trust and three(10.0%) had been befriended by volunteers.Use of medication17 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 depotinjections. Six (20.7%) were prescribed Lithium to stabilise their mood andseven (24.1%) were taking antidepressants. Nine (29.0%) were taking drugs formedical problems or were receiving anthroposophical remedies. Five (16.1%)were not taking any medication.Mental health measuresThe 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 0-11anxiety/depression: mean 5.2 median 6.0 st. dev. 2.4 range 1-10hostility/suspiciousness: mean 2.1 median 2.0
  23. 23. The Blackthorn Garden Project 23 © The Sainsbury Centre for Mental Health, 1995 st. dev. 1.9 range 0-6retardation/withdrawal: mean 2.4 median 2.0 st. dev. 2.5 range 0-8These ratings may have underestimated the degree of psychiatric disturbancesince, in order to increase reliability, when the rater was uncertain which oftwo scores to give on a particular item the lower score was always chosen.Furthermore, the BPRS tends to measure positive symptoms better than thenegative symptoms found in long-term illnesses. Nevertheless the resultsindicate that the co-workers had a number of psychiatric symptoms and, inparticular, that there was a high level of depression and anxiety. This wasconfirmed by self-assessments using scales designed to measure depressivesymptoms 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).
  24. 24. The Blackthorn Garden Project 24 © The Sainsbury Centre for Mental Health, 1995Social supportSocial isolation, loneliness and difficulties in relationships are common issuesfor people with mental health problems. Hence co-workers were asked abouttheir 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 whomthey could confide.However, 11 co-workers (35.5%) had no close friends and 19 (61.3%) sawfriends or went out socially less than once a week. Only nine (29.0%) felt theyhad no difficulty making friends and only six (19.4%) felt they had no difficultymixing 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 functioningSocial functioning is often impaired in those with serious and chronic mentalhealth problems. Co-workers were rated on two measures of socialfunctioning - the Social Behaviour Schedule (Wykes and Sturt, 1986) whichrates problems in social behaviour and the Global Assessment of FunctioningScale (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
  25. 25. The Blackthorn Garden Project 25 © The Sainsbury Centre for Mental Health, 1995 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 0–5Behavioural 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 functioningThe Garden Project offered co-workers the chance to regain or to developgeneral work skills. 25 co-workers (80.6%) had worked in a full-time job in thepast, but the mean time out of work was 7 years 11 months (range 6 monthsto 40 years). This factor alone would have made it difficult for them to find ajob in open employment. The mean time worked in their last full-time job was3 years 10 months but the range was considerable -one week to 25 years. Twoco-workers (6.5%) had part-time jobs while they were working in the GardenProject 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,
  26. 26. The Blackthorn Garden Project 26 © The Sainsbury Centre for Mental Health, 1995two (6.5%) had diplomas and five (16.1%) had occupational qualifications. Ofthe remainder, two (6.5%) had A levels, one (3.2%) had RSA English andanother five (16.1%) at least one O level, CSE or GCSE. Therefore, comparedto the general population a number of the co-workers had enjoyed goodeducational opportunities. Nevertheless, 13 (41.9%) co-workers had noeducation 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 ManpowerServices Commission or Department of Employment Training Agency work ortraining 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 YearWomen in Blackthorn GardenIn the first year 16 of the 31 co-workers were women (52%) and thisproportion was maintained in the second year (28 out of 55,51%). This is animportant finding as women are usually under-represented in work projectsfor people with mental health problems. For example, women made up a thirdor less of the workforce in the other work rehabilitation projects studied byThe Sainsbury Centre for Mental Health (Nehring et al., 1993). While men aremore likely to be referred onto secondary mental health services, communitysurveys show that women have a higher prevalence of mental health problems.Recent community surveys have found that 8.7 -15.0% of women have mentalhealth problems compared with 7.1 -12.5% of men (Dean, 1988). Hence, theequal representation of women in the Garden Project may reflect the numberswith mental health problems in the local population and result from theprojects close relationship with primary care.The range of co-workers supportedThe data on the co-workers in the first year shows that Blackthorn Gardenhad successfully engaged co-workers of all ages, from a variety of backgroundsand with a wide range of problems and needs. Co-workers included both thosewith long-term and disabling conditions such as schizophrenia and bipolarillness who are often treated by specialist mental health services, and those
  27. 27. The Blackthorn Garden Project 27 © The Sainsbury Centre for Mental Health, 1995with chronic mental health, physical and personality problems who usuallyreceive long-term support from their GPs.Chapter 4 discusses the use of primary care to support people with seriousand disabling mental health problems in their local communities and how thiswas achieved in Blackthorn Garden. The needs of those with chronic neurotic,personality or physical disorders are also important. It has been estimated that10% 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 whichrecover in time. However, the second group supported by the Garden Projectrepresented the subgroup of primary care patients who have chronic orrecurring neurotic conditions, personality difficulties or disabling physicalproblems. They are helped only to a limited extent by conventional medicaltreatments and require long-term support from their GPs. They frequentlyhave a mixture of anxiety and depression and their mental health problems arecomplicated by physical symptoms, poor physical health and social difficulties.While GPs may get to know these patients, their families and socialcircumstances very well over the years, the amount of time they can give themin the normal practice setting is limited. Many receive a variety of psychotropicdrugs but there are few opportunities for counselling, psychological therapiesor other forms of support. The establishment of the Blackthorn Trust metsome of the needs of this group by providing counselling and the creativetherapies. The opening of Blackthorn Garden provided them with socialsupport, meaningful occupation and a chance to contribute.The initial interviews showed that this group of co-workers particularly sawthe Garden Project in terms of opportunities for personal development - suchas gaining confidence (especially in social situations), making friends, becomingmore assertive, learning to consider their own needs and developing thespiritual side of their existence. Other goals related to personal attainmentincluding getting back to work, taking exams and deciding on future plans.Many of these co-workers also hoped to improve their physical health andgeneral well-being by working in the project.
  28. 28. The Blackthorn Garden Project 28 © The Sainsbury Centre for Mental Health, 1995Co-workers in the Second YearGeneral profileDuring 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 familyproblems and multiple sclerosis. Eight of the co-workers were in-patients inOakwood Hospital at some point during the year. Attendance was high - co-workers attending on average for 89% of their agreed time although this figureis artificially high due to over attendance of some co-workers (range 50 -215%). During the year ten co-workers stopped attending, of whom six hadstarted in 1993. Two left after finding jobs - although one was later admitted tohospital. Two left after moving to other areas and one because he was tooweak to travel. One woman stopped coming because she was highly anxiousand needed to be accompanied. One man with severe behavioural problemswas asked to leave after becoming disturbed on a number of occasions. Twomen decided that the project was not for them and one woman who was verysocially isolated stopped coming for no clear reason.The follow-up groupThe follow-up study was focused on those co-workers with long-term, seriousand disabling mental health problems who traditionally are supported bysecondary mental health services. This group included co-workers withschizophrenia, bipolar illness and psychotic depression. Co-workers from thisgroup who joined the Garden Project in the first year were rated on themeasures of mental health, social and general functioning during their firstmonth 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 theGarden Project. While this is of concern, it is not a high percentage whencompared to other day services.Given the small size of the final sample and the large amount of variability inthe group, the researchers were not surprised to find no significant differencesin mental health, social or general functioning after 12 months. Even if a largersample had been available it could still have been predicted that their mentalhealth problems would have remained fairly stable, given the nature of theirillnesses and the wide range of factors which affect them (such asaccommodation, finances and family issues). It might have been expected that
  29. 29. The Blackthorn Garden Project 29 © The Sainsbury Centre for Mental Health, 1995providing meaningful activity and occupation would result in improvements innegative symptoms - such as increased drive and more social contact (Wingand Brown, 1970). However, the small numbers in the follow-up study and thelack of emphasis on negative symptoms in the Brief Psychiatric Rating Scalemade it unlikely that any change would be detected. A similar difficulty arosewith the Social Behaviour Schedule which concentrated on problem behavioursmainly of a psychiatric nature rather than on the improvements in generalsocial functioning which staff felt they could see in particular co-workers overtime. Even so the final numbers were too small to measure any significantdifferences.SummaryBlackthorn Garden co-workers had a wide variety of mental health andphysical problems, the mix reflecting the projects close relationship with thegeneral practice and its mission to provide care in the community for peoplewith long-term, serious and disabling mental health problems. Within theGarden Project it was possible to find an adolescent with school phobia, ayoung adult with physical disabilities and a housewife suffering from depressionworking alongside a co-worker with a resistant psychosis, who had lived in aninstitution for most of her life. In the first year, 23% of the co-workers hadschizophrenia or related disorders, 10% had bipolar illnesses, 23% haddepressive illnesses and 13% had neurotic disorders, the remainder having arange of disabling illnesses. They had serious difficulties with work and socialfunctioning and one sixth of those with mental health problems also hadmedical problems or physical disabilities. It was clear that the Garden Projecthad been successful in engaging many co-workers with diverse problems andneeds including those with long-term, serious and disabling mental healthproblems.
  30. 30. The Blackthorn Garden Project 30 © The Sainsbury Centre for Mental Health, 19953. The Co-workers’ ViewsThe most important part of the research into Blackthorn Garden was findingout what the co-workers thought of the project. Co-workers wereinterviewed by the researchers at the end of the projects first year and againat the end of the second year.Surveys which ask people how satisfied they are with services tend to elicit highlevels of satisfaction (Lorefiee and Borus, 1984), so the interviews weredesigned to elicit co-workers perceptions, feelings and comments aboutspecific aspects of the Garden Project. A semi-structured interview was usedso that co-workers could be encouraged to talk freely about particular areas.The researchers stressed that the interviews were confidential and that theywere interested in the co-workers own views. A content analysis was made ofthe responses to each question, yielding a number of categories into whichindividual responses could then be placed.In both years, almost all the co-workers expressed positive feelings about theGarden Project. The friendly, relaxed and caring atmosphere and the sense ofcommunity were frequently mentioned: Its the whole atmosphere - everybody is so cheerful and understanding, no questions asked, no pressure. Being a co-worker brings people closer together. Its 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 outof the house and provided the sense of purpose and meaning which is oftenlost during chronic illnesses. One co-worker who was suffering fromdepression joined because: ...doing some hard work might spark something - because before Id been inactive, feeling something was missing.
  31. 31. The Blackthorn Garden Project 31 © The Sainsbury Centre for Mental Health, 1995Another felt she had gained: ...somewhere to go to, structure, a job to do and knowing I will be with other people - its 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 ofbeing employed: Its 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 andtroublesome psychotic symptoms. For example, one co-worker would come into the project when feeling mental anguish or despair - and get relief fromdigging the garden.Many co-workers were proud of the Garden Projects achievements andvalued 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 doesnt matter how bad or good you are at something provided you try.It was also clear that many individuals felt recognised and valued: Its helped me a lot - its helped me get back my self-respect. It helps me feel needed and (more important) useful.’
  32. 32. The Blackthorn Garden Project 32 © The Sainsbury Centre for Mental Health, 1995Some co-workers spontaneously commented that the Garden Project offeredthings 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". Its more of a family - people in hospital get discharged - you dont 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 workprojects were seen as less stimulating or unsatisfying: ‘There are more things to do here - more opportunities. Unless theres an actual class going on at the day centre you just sit around and here youve 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 GardenCo-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’
  33. 33. The Blackthorn Garden Project 33 © The Sainsbury Centre for Mental Health, 1995Another liked: ...being out in the fresh air and feeling Im doing something constructive and positive.The changing seasons ensured variety and the garden provided a wide range oftasks and opportunities. The work ranged from heavy physical jobs such asdigging or laying paths to light work such as propagating which could be doneby someone in a wheelchair. Some jobs could be done in groups while othersprovided 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 ingroups stressful: Theres 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 theway: ...everybody does their bit – the friendly atmosphere – everyone works together.Another noted: ...sometimes you dont come to do the gardening – you come for the companionship and friendship.However, one woman felt lonely working in the garden and preferred thekitchen where there were more people to chat to.A number of co-workers preferred work in the garden to that in the kitchenand cafe because it was less pressured and the pace was slower. One womanrecovering from a manic episode remarked: Its more relaxing - theres no pressure of time to finish the job and be ready for lunch.’
  34. 34. The Blackthorn Garden Project 34 © The Sainsbury Centre for Mental Health, 1995Individuals were able to work at their own pace and could gradually take onmore as their functioning and confidence improved.The main problems reported by co-workers working in the garden related tothe physical demands and to the environment when the weather was poor.Some older individuals and those with medical problems such as arthritis foundbending, lifting and digging a problem. Other co-workers disliked the cold andthe dirt or being crowded together in the greenhouse when it was raining.However, one woman who was not a mad keen gardener and who dislikedgetting her hands dirty said that she still liked to work in the garden because ofthe company and sharing.Working in the Kitchen and CaféIn the kitchen, some co-workers particularly enjoyed the nature of the workand 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 – its 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 Ive done something.Co-workers involved in the cooking could quickly see results and their effortswere appreciated at lunch time by the others working in the project and by thecustomers.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 bedone regularly. One co-worker said: ‘I dont 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 largequantities of vegetables or found the standing and lifting heavy pans physicallytiring.
  35. 35. The Blackthorn Garden Project 35 © The Sainsbury Centre for Mental Health, 1995The stresses of working in the kitchen were related to the faster pace and thepressure to get meals ready in time. It could feel noisy and crowded and attimes 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 whoseconcentration and drive were impaired and for those who were thoughtdisordered or experiencing hallucinations. They found it difficult to rapidlychange tasks or to take in instructions when the kitchen was busy. Anothersource of stress resulted from face-to-face contact with customers (forexample when taking orders for meals or serving in the cafe) and consequentlysome co-workers preferred to confine their work to the kitchen.Being With OthersOne of the main sources of stress described by co-workers wherever theywere working was being with other people. Tea-breaks and meal-times (whenco-workers, volunteers and staff would share a table), and co-workersmeetings, were found by some to be particularly stressful.This source of stress seemed to become more of a problem in the second yearas the number of people working in the Garden Project increased.Other co-workers who had neurotic or personality problems found workingwith 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 Im not feeling too great myself.’
  36. 36. The Blackthorn Garden Project 36 © The Sainsbury Centre for Mental Health, 1995However, 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 companyand friendship and saw them as an important part of what the Garden Projectoffered. Somehow a balance had to be struck between the need for socialsupport and the stress experienced in social situations. For particularindividuals, this equation could vary from day to day depending on their mentalhealth and on what was happening in the project. The staff tried to be sensitiveto this when allocating tasks and the different social environments provided bythe garden and the kitchen helped to ensure that individuals varying needscould be met.Being Involved and Having a SayMost of the co-workers appeared actively involved in the work of the GardenProject. Not surprisingly, during the first year the majority reported needing toask what to do or for instructions on specific tasks. By the end of the secondyear, most of those working in the garden felt that they could get on withthings 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 sawthemselves as having particular responsibilities, generally for identified taskssuch as mowing the lawn or baking, but most took on whichever tasks wereallocated to them on a daily basis. For one this was a relief: Ive come from being the one who has to have the ideas...and Im actually enjoying not having to take those responsibilities for the time being. Im responsible in so far that I see a need and dont shy away from it, but I dont expect to have to think a week ahead.When co-workers were asked what they felt was expected of them in theGarden 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.
  37. 37. The Blackthorn Garden Project 37 © The Sainsbury Centre for Mental Health, 1995Some felt they were expected simply to turn up and to do the work: Work hard, get on with the job - thats it really.While others felt they were expected to get better, leave the project andreturn 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 ona day-to-day basis. At the end of the first year only six of the 22 co-workersasked felt that they had a lot or quite a bit of say, while nine felt they had no orvery little say. Four said that they did not want any say. None complained thattheir 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 mentalhealth 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 dont really expect them to ask me.’In the second year about a third of the co-workers felt they had no or verylittle say in what happened in the project and again half were content with this
  38. 38. The Blackthorn Garden Project 38 © The Sainsbury Centre for Mental Health, 1995situation. The monthly co-workers meetings were seen by some as a forum inwhich their views could be expressed.At the end of the second year, although individuals were gradually taking onmore responsibility, there was still a need to increase the co-workersopportunities to take part in day-to-day decision-making and to help to run theGarden Project. In the first two years the underlying philosophy in BlackthornGarden had emphasised helping individuals to take charge of their ownillnesses rather than empowering the co-workers as a group, collectivelyincreasing their influence and responsibilities within the project. The fact thatsome of the co-workers said that they did not want more responsibility or sayin the project may have reflected their long histories of disabling illness andprevious experiences of disempowerment in mental health services. However,it may also have resulted from the Garden Projects proximity and closerelationship to the Blackthorn Trust and General Practice - some co-workerstending to see themselves as recipients of therapy rather than as workers andmembers of a shared enterprise. The co-workers monthly meetings and theappointment during the second year of key co-workers with particularresponsibilities for the work were first steps towards shared responsibility.Thinking About the FutureCo-workers were asked whether anyone in the Garden Project talked to themabout how they were getting on or about the future and how they felt aboutthis.Many felt they had not had the opportunity to talk on a one-to-one basis abouthow things were going or what might happen in the future and that suchopportunities 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 ortheir future: Sometimes you can talk and talk and just turn in on yourself.
  39. 39. The Blackthorn Garden Project 39 © The Sainsbury Centre for Mental Health, 1995A few co-workers felt that the Garden Project was not the right place for suchdiscussions and preferred to use opportunities provided by counselling ortherapies 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 30interviewed at the end of the second year, thought they would continueworking 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 areaas 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 tocontinue until their health had improved: For as long as Ive still got problems - but (touch wood) I think Im getting better now.Some of the co-workers who were planning to move on also wanted to givesomething 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 recoveringfrom a depressive breakdown intended to remain in contact: 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 changingfrom being supported by the project to contributing as volunteers and friendsthemselves.Most of those co-workers who were not planning to stay indefinitely hoped tofind paid employment or voluntary work or to move into further education.
  40. 40. The Blackthorn Garden Project 40 © The Sainsbury Centre for Mental Health, 1995SummaryMost co-workers were keen to talk about the Garden Project and theirpersonal experiences of working in it. Research interviews tend to elicitspontaneous answers, often influenced by recent events and pressures, andinevitably some of the co-workers accounts were influenced by the stresses orsuccesses of that day or week. However, over the course of the interviews anumber of consistent themes emerged.Co-workers valued the work and the friendly atmosphere and sense ofcommunity provided by Blackthorn Garden. They felt valued and had a senseof pride in the projects achievements although some would have liked moreinvolvement in the day-to-day decision-making. The variety of tasks available inthe garden, kitchen and cafe meant that most co-workers could find a nichewhich suited them, but a number would have liked more opportunity to talkabout how they were getting on and about the future. For some being withothers was a potent source of stress, but many co-workers appreciated thecompany as much as the work and a few hoped to remain in contact with theproject after leaving.At the end of the second year interviews, co-workers were asked to spend fiveminutes writing down what effect they thought the Blackthorn Garden Projecthad on them. Their responses are contained in Appendix 2.
  41. 41. The Blackthorn Garden Project 41 © The Sainsbury Centre for Mental Health, 19954. Integrating Community andPrimary CareIn Britain primary care involves the early detection and treatment of illnesscombined with primary prevention such as immunisation and health education.In addition, GPs and primary health care teams provide continuity of care forindividuals and families. This continued commitment and their knowledge ofindividuals circumstances and local communities enables GPs and primaryhealth care teams to take a developmental and holistic view of their patientsand the problems they bring.General practice has always played an important part in the care of peoplewith 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 withproblems for which there is no cure (ODowd, 1988). Constructive ways ofsupporting such patients often include moving from a purely medical to aholistic model and sharing care with other members of the primary health careteam.The move towards care in the community means that GPs will be increasinglyinvolved in supporting people with mental health problems who would havebeen cared for in hospital. These include people with acute or episodicdisorders and those with severe and disabling illnesses (mainly schizophrenia)who have been treated in hospital for many years. The resettlement of thislatter group of long-stay patients is likely to increase the work-load andresponsibilities of GPs and primary health care teams. Although the actualnumbers of former long-stay patients joining each GPs list may be very smallthey are a profoundly disabled group with extensive and continuing needs forservices.Managing Mental Health Problems in Primary CareThe part played by GPs in detecting and treating psychological problems hasbeen well documented. In Britain, 98% of the population are registered with aGP and 60 - 70% consult their GP in any year. It has been reported that 14% ofthose who consult in a year do so for problems diagnosed by GPs as largely
  42. 42. The Blackthorn Garden Project 42 © The Sainsbury Centre for Mental Health, 1995psychological in origin (Shepherd et al., 1966) while a further 10 -12% may havemental health problems which are not detected by their GPs (Goldberg andBlackwell, 1970) - although there is considerable variation between differentsurveys. The extent to which problems are labelled as psychological variesgreatly amongst GPs (Shepherd et al., 1966) and may relate to thecharacteristics of the doctor, the type of patient and perhaps to the resourcesavailable to deal with psychological distress. Most people diagnosed as havingmental health problems are treated in the primary care setting, only 5.5% beingreferred to the secondary mental health services (HMSO, 1979).Although psychiatrists sometimes assume otherwise, GPs have always playedan important part in supporting people with long-term and disabling mentalhealth problems, many of whom have always lived in the community. Surveysof primary care patients have found that approximately 7% had mental healthproblems lasting longer man one year and just under a quarter of these wereseverely disabled (Shepherd et al., 1966; Regier et al., 1985). A study of peoplewith schizophrenia who had been discharged from hospital found that fiveyears after discharge 24% were only in contact with their GP (Johnstone et al.,1984). Similarly, Melzer et al., (1991) following people with schizophreniaduring their first year after discharge from St Thomas Hospital, found that GPswere the professionals with whom they were most likely to be in contact.How does having people with long-term mental health problems on their listaffect the workload of GPs? A survey of 13 general practices in London hasshown that patients with schizophrenia consulted their GP more often thanthe average patient but with similar frequency to those with chronic physicaldisorders. Patients with schizophrenia also presented more often with physicalcomplaints than the average patient (Nazareth et al., 1993). The poor physicalhealth of people with long-term mental health problems (Brugha et al., 1989)may lead to GPs concentrating on physical problems rather than activelymanaging the mental illness. A survey of GPs in the South-West ThamesRegion found that only nine out of 369 respondents had specific practicepolicies for looking after patients with long-term mental health problems and287 felt that such patients only came to their attention when there was a crisis(Kendrick et al.,1991).
  43. 43. The Blackthorn Garden Project 43 © The Sainsbury Centre for Mental Health, 1995A Keystone of Community Psychiatry?The World Health Organisation Working Group on Psychiatry and MedicalCare (1973) identified the primary medical care team as the keystone ofcommunity psychiatry. 12 years later, the House of Commons Social ServicesCommittee (1985) reported that Community Care depends to a large extenton the continuing capacity of GPs to provide primary medical care to mentallydisabled people. In 1992, one of the three mental health targets of The Healthof the Nation (Secretary of State for Health, 1992) was to improve significantlythe health and social functioning of mentally ill people - a target which needsto be addressed by both primary and secondary care services.The World Health Organisation have outlined reasons why GPs are wellplaced to provide primary care for mental illness (WHO, 1973). These includethe tendencies of physical and mental illnesses to co-exist and for many peoplewith mental health problems to present with physical complaints and not toconsider themselves to have psychological problems. Many psychologicaldisorders are related to family and social difficulties which are often known toGPs and GPs are able to provide long-term support without frequent changesof personnel.However, providing care for people with long-term and disabling mental healthproblems in general practice presents some particular problems. Such patientsrequire input from a number of sources combined with regular assessment oftheir needs. They are heavily dependent on specialist services such as day careor residential care to enable them to remain out of hospital and the GPscontact with such services may be limited. Although these patients may presentto GPs for physical health problems or in crises, such consultations do notprovide good opportunities for coordinating overall care. Furthermore, theymay be lost to follow-up, and the demand-led nature of general practice doesnot easily adapt to the assertive outreach needed to prevent deterioration(Tantam and Goldberg, 1991).Hence as care in the community develops, primary and secondary mentalhealth services need to find new ways of working together aimed at those withlong-term disabling mental health problems so that this vulnerable (andhistorically deprived) group receives appropriate care.
  44. 44. The Blackthorn Garden Project 44 © The Sainsbury Centre for Mental Health, 1995What are the Risks of Combining Community Carewith Primary Care?One of the concerns about setting up community care projects in primary caresettings is the risk that they may gradually cease to focus on those whom theywere set up to target. For example, projects set up to provide a service forpeople with serious mental health problems may come to concentrate on themuch larger population with self-limiting disorders found within generalpractice. One example of this problem has arisen with the increasing tendencyto link community psychiatric nurses (CPNs) to primary care. Approximatelyhalf the referrals to CPNs now come directly from GPs. Although the CPNservice originally developed to enable people with severe mental healthproblems to live in the community, those attached to primary care are tendingto work with a less disabled group - who often have neurotic problems (Wooffet al., 1983; White, 1990). The benefits of CPN input to those with neuroticdisorders remain uncertain (e.g. Gournay and Brooking, 1992) and this trendinevitably reduces the service available for the severely mentally ill.A second way in which resources within primary care may be directed towardsthose with less severe mental health problems is the increasing employment ofcounsellors within general practice. A third of general practices within Englandand Wales now have a dedicated counsellor (Sibbald et al., 1993) as do nearlyhalf of all fundholding practices (BMJ, 1994). However, the expansion ofcounselling services within primary care has occurred largely withoutevaluation of the efficacy and cost-effectiveness of such a service (King, 1994).Again this raises concerns as to whether resources for community carediverted to primary care settings will be used appropriately for those withsevere and disabling disorders.The advent of fundholding in general practice increases the opportunity fordeveloping appropriate local services but also the risk that the needs of certaingroups maybe forgotten. Since April 1993, GP fundholders have been able topurchase community and outpatient mental health services and services forpeople with learning disabilities. Concern has been expressed that fundholdersmay buy specialist mental health services for people who have traditionallybeen treated effectively within primary care while failing to make provision forpeople with schizophrenia and other disabling conditions. This is despiteguidance from the National Health Service Management Executive that with
  45. 45. The Blackthorn Garden Project 45 © The Sainsbury Centre for Mental Health, 1995the extension of GP fundholding in April 1993, skilled psychiatric care shouldbe concentrated on the more severely mentally ill (NHSME, 1992).One way of avoiding this problem is to ensure that fundholders are aware ofthe needs of people with long-term and severe mental health problems and theeffectiveness of services targeting them, as well as their obligation aspurchasers to contribute to the targets of the Health of the Nation. Liaisonbetween primary care and secondary mental health services, and between GPs,Family Health Services Authorities and District Health Authorities will help toensure a balance between the needs of practice populations and the needs ofsmall groups with serious or disabling conditions who require special care. GPsand primary health care teams will also need to develop specific policies foridentifying and supporting people with long-term mental health problems ontheir practice lists.New Approaches to Integrating Primary andCommunity CareThe traditional approach to integrating primary care and secondary mentalhealth services has been for psychiatrists and other mental health workers tovisit general practices – holding clinics or providing advice. However, a fewgeneral practices have developed services aimed at people with long-termdisabling mental health problems from within the practice, rather thanimporting professionals from other services.A case-manager in primary careOne approach to ensuring that people with long-term disabling mental healthproblems receive appropriate continuing care was developed by a StreathamVale general practice with approximately 8,000 patients.(Cohen, 1992) They employed a case-manager within the primary health careteam to identify people with long-term disabling mental health problems on thepractice list, assess their functioning and co-ordinate the various servicesneeded to maximise their functioning and sense of well-being in thecommunity. This meant addressing needs such as accommodation andemployment as well as mental health, physical problems and medication. Thecase-manager employed was trained as a community psychiatric nurse, had adiploma in counselling and some social work experience. To ensure that her
  46. 46. The Blackthorn Garden Project 46 © The Sainsbury Centre for Mental Health, 1995work did not drift away from people with long-term mental health problemsher contract of employment specified this target group only. The post was setup as an integral part of the primary health care team and the practice (nowfundholding) received 70% reimbursement for the cost of the salary from theFamily Health Services Authority.Blackthorn Garden - A community project linked to primary careBlackthorn Garden represents an even more ambitious attempt to integratethe care of people with long-term mental health problems within primary care.It provides a continuing source of rehabilitation and support for people withchronic mental and physical problems, and it was probably the first workproject for people with such problems to be created in a primary care setting.The development of the community care project alongside the BlackthornGeneral Practice and Trust appeared to increase the social opportunities andstatus of those using the project. Co-workers and volunteers working in theGarden Project had a variety of strengths as well as of problems and needs -providing many opportunities for mutual understanding and support. They haddaily contact with other members of the local community who used thegeneral practice, garden and cafe. The location of the Garden Project on thesame site as the (highly valued) Blackthorn Medical Centre helped to reducethe stigma attached to mental health problems - and symbolised the permeableboundaries of the Garden Project and the Trust. People with psychologicalproblems who normally would not consider referral to the psychiatric servicescould be persuaded to visit the Garden Project and often to join in. Similarly,for people who tended to somatise their problems, joining the GardenProject did not mean accepting a mental health label as not everyone workingthere had psychological needs.The close relationship between the Garden Project and the general practiceseemed also to benefit co-workers families. When mental health care istransferred from hospital to community settings, families may have to play agreater part in supporting relatives with mental health problems who wouldpreviously have been admitted for treatment. At Blackthorn, families appearedto appreciate the proximity of the project and the possibility of keeping closelyin touch with GPs and project staff. Several members of a family (with orwithout identified needs) might be involved in activities in the Garden Project
  47. 47. The Blackthorn Garden Project 47 © The Sainsbury Centre for Mental Health, 1995or the Trust - enabling a form of sharing and identification not usually possiblein mental health services.Staff in the Garden Project reported a number of benefits from working closelywith the primary health care team and the therapists working in the Trust.Weekly meetings with the GPs and therapists provided a forum in whichdifferent views of the co-workers/patients could be shared. Co-workers needscould be addressed from a variety of perspectives including emotional,biographical, social and nutritional. GPs could help the Garden Project staff tounderstand the positive and negative symptoms experienced by co-workerswith schizophrenia and the side-effects of medication. Creative therapists couldsupply new insights into working with people who did not seem to improvewith conventional techniques. The project workers could provide feedback onhow co-workers were developing in the project. If a crisis occurred theproject staff knew that a quick response could be obtained from the GPs - whocould in turn alert the mental health services - and this helped them to createa containing atmosphere for individuals who were distressed and disturbed bytheir symptoms.The four GPs also appreciated the relationship between the BlackthornGarden Project Trust and General Practice. The weekly meetings and the GPsroles as Medical Officers to the Trust and Garden Project ensured goodcommunication. There was regular feedback and discussion of co-workers andGPs were informed if co-workers failed to turn up. They could liaise with theGPs of co-workers referred from other practices - for example, to suggestchanges in medication. There was appreciation of the team approach inworking with people with chronic and disabling problems - a process describedby one of the GPs as piecing a puzzle together to see how people could behelped. One GP felt that he had learnt to focus primarily on the person andonly secondarily on the illness. Another found it encouraging to see peoplewith chronic health problems doing something useful and taking pride in theirwork.At Blackthorn, the combination of the creative therapies and the generalpractice arose from the need to find new ways of working with and sharing theburden of chronic illnesses resistant to medical treatments. However, althoughthe Garden Project shared the care of people on the practice list who hadlong-term disabling problems, it also attracted new referrals from psychiatrists