Steps, challenges and lessons in developing community mental health care

Abstract

This paper summarises our own accumulated experience from developing community-orientated mental health services in England and Italy over the last 20-30 years. From this we have provisionally concluded that the following issues are central to the development of balanced mental health services: a) services need to reflect the priorities of service users and carers; b) evidence supports the need for both hospital and community services; c) services need to be provided close to home; d) some services need to be mobile rather than static; e) interventions need to address both symptoms and disabilities; and f) treatment has to be specific to individual needs. In this paper we consider ten key challenges that often face those trying to develop community-based mental health services: a) dealing with anxiety and uncertainty; b) compensating for a possible lack of structure in community services; c) learning how to initiate new developments; d) managing opposition to change within the mental health system; e) responding to opposition from neighbours; f) negotiating financial obstacles; g) avoiding system rigidities; h) bridging boundaries and barriers; i) maintaining staff morale; and j) creating locally relevant ser- vices rather than seeking “the right answer” from elsewhere.

Three elements can serve as a guide in improving mental health services: ethics, evidence and experience 1. In our view, when planning community-based mental health services, it is preferable to start with a statement of the principles intended to guide new service developments. Such principles can be used in a form of triangulation, so that this ethical base is combined directly with the relevant evidence base and with the experience base to produce the strongest possible case for change.

In this paper we shall present key issues which arise in everyday clinical practice, so that these can be helpful as you implement better mental health care. We shall therefore discuss here only one of the above three key elements, the experience base, which is relatively rarely covered in the literature. We shall organise our main findings in relation to ten key challenges which are often faced by those attempting to improve community mental health services. Our starting point for this paper is our own accumulated experience from developing community-orientated mental health services in England and Italy over the last 20-30 years.

A FRAMEWORK FROM EXPERIENCE

From our own experience, we have provisionally concluded that the following issues are central to the development of balanced mental health ser- vices 2: a) services need to reflect the priorities of service users and carers; b) evidence supports the need for both hospital and community services; c) services need to be provided close to home; d) some services need to be mobile rather than static; e) interventions need to address both symptoms and disabilities; f) treatment has to be specific to individual needs.

DEVELOPING COMPREHENSIVE GENERAL ADULT MENTAL HEALTH CARE

Within the wider context of these guidelines, we shall discuss next the main categories of service which are necessary for comprehensive care. We have proposed that there are five key categories of service, all of which are necessary to provide a comprehensive range of local services 2: a) out-patient/ambulatory clinics; b) community mental health teams; c) acute in-patient care; d) long-term residential care in the community; e) rehabilitation, work, and occupation.

In addition to these main categories, it may be important to develop variations, or even separate forms of support, which are directly service user-led, such as peer support workers, peer advocacy workers, or self-help groups 3. Pragmatically this means that, for a service in transition 4, it is not necessary to delay reducing the size of a long-stay psychiatric hospital until all these components exist in the community. That would often be impossible because the main or the only source of funds for community services is from savings made at the large hospital as it reduces in size 5.

In fact, there is often a dilemma about whether to spend money on increasing the quality of care within large and usually neglected psychiatric hospitals, or rather on developing services outside hospital. In our experience the answer to this dilemma will need to be resolved according to local circumstances, but in general it is important to progressively move an increasing proportion of the whole mental health budget, and in many cases eventually the majority of the budget, to community based services while simultaneously bringing the quality of care in the (shrinking) institutions to an acceptable level. Here again there is a balance: too rapid a shift of resources can produce unstable and confused new clinical ser- vices that are unable to offer integrated care, especially to people with long-term mental disorders; too slow a process may not allow any momentum for change to be created.

Investment during the transition from a more hospital to a more community oriented system often needs a focus upon training to achieve individually-orientated staff attitudes and practices (invisible inputs), for staff in hospital and community settings, rather than upon investment in the physical environment. The advantage of this way of setting priorities is that staff in the future, wherever they work, will have a more therapeutic approach.

STAKEHOLDERS

In our view, mental health services are best planned by bringing together the whole range of stakeholders who have an active interest in improving mental health care 6-8, including: a) service users; b) family members/carers; c) professionals (mental health and primary care); d) other service provider groups (e.g., non-governmental organisations); e) policy makers; f) advocacy groups; g) planners.

There is also a need to ensure that groups which are not powerful advocates for their own interests are also given equitable consideration in planning services, such as recently established service user groups 9. What can be done where some key stakeholder groups do not exist? In this case it may be necessary to take a long-term view and for those controlling mental health financial resources to invest to initiate and support the growth of, for example, ser- vice user and family member groups.

TEN KEY CHALLENGES

From our experience in developing and working in community mental health services, we have identified ten key challenges facing people committed to improving mental health care. We present each key challenge in the form of a statement (in italics) followed by a brief discussion on each challenge.

Challenge 1. Anxiety and uncertainty

Creating new services necessarily produces uncertainty about the future. It is usually helpful if clear undertakings can be given, for example, guarantees to staff to avoid redundancies. It is an advantage to have some staff who prefer to work in hospital as such services will continue to be needed in future. Service leaders can help staff by openly supporting shared risk taking, and by allowing mistakes as long as there is a learning/adaptation process at the same time.

Although guarantees of no redundancies, if possible, can be very helpful, for example through constructive discussions with trade unions, in low resource countries there may be high staff vacancy rates and the question of redundancy does not arise. Similarly, if the service provider organisation can make a clear statement of support to staff, such as that below on risk-taking, then this can provide a clear framework for staff to work with confidence (Table 1).

Table 1.

Table 1 South London and Maudsley NHS Foundation Trust policy on responsible risk-taking

The Board accepts that staff, users and carers will all make decisions which are risky in that they may not have predictable or definitely successful outcomes. Taking these often difficult decisions are a part of everyday practice. The Board fully supports staff in takign these decisions provided they are made responsibly by reference to the principles of good professional practice.

Examples of ensuring responsible risk taking include:

- Making use of the care programme approach (case management and care planning) policy; crisis and contingency planning can help in arriving at a high risk decision and ensuring good communication

- Risky decisions are discussed fully with key members of the team

- Testing decisions with colleagues

- Seeking advice from professional bodies

- Seeking advice from Trust lawyers

- Clear entries in the healthcare record should outline how the decision was made and alternatives considered

- Good note-keeping enalbes one to justify decisions

Challenge 2. Lack of structure in community services

The change of service structure, and in particular developing more and smaller services away from the main hospital site, can run the risk of destroying established routines and structures. One of the positive functions of these routines is to reduce anxiety, and recognising this it may be important to develop, especially for a transitional period, even more structure and routine than is strictly necessary. This may include, for example, staff support groups, regular information sharing meetings between managers and staff, and clear timetable of regular clinical meetings, as well as written operational policies and referral procedures.

In the first stages of working in ser- vices which operate outside hospital sites, staff often feel an increased level of anxiety as the structures and routines they were familiar with do not operate in the same way in community services. At least in the transitional period until community services become consolidated, it may be useful to deliberately introduce arrangements which give many levels of structure to reduce such staff anxiety. Examples include regular staff group and individual supervision meetings, regular clinical case review meetings, and periodic forms of audit or self-appraisal on the performance of the clinical team.

Challenge 3. How to initiate new developments?

Often the biggest challenge facing stakeholders in beginning a process of reform is that it is difficult to imagine how the mental health system could possibly be different. An invaluable way to begin is by visiting other places which have started or completed the development of community-based care. It is often helpful to borrow a copy of some of their basic tools such as timetables, assessment forms, job descriptions, or operational policies. As a local service development plan develops, it is often important to allocate each task to a person or group and to set a deadline for its completion, along with a mechanism, such as the next meeting of the planning group, to see whether tasks have been completed or not. It may need to become clear to staff that it does matter, for example to their salary or to their promotion, whether they fulfil the agreed tasks or not.

One of the first difficulties for staff with long experience of institutional practice is that they cannot imagine working in any other way. A remedy that is often used is to visit services in otherwise comparable sites, perhaps in the same region, that have recently initiated community-based care. Such visits provide the opportunity to see ideas in practice and from one’s own direct experience what it is possible to do, and to learn from specific aspects of practice elsewhere, and then to adapt this for local benefit. For example staffing rotas, operational policy documents, and job descriptions can be taken away and adapted for local use.

Challenge 4. How to manage opposition within the mental health system

Commonly there will be a range of staff views on proposals to change the care system. Many opportunities may be necessary to involve the range of staff, including a widespread process of consultation, with planning groups including diverse opinions. Linking local specific proposals to generally agreed plans, such as the World Health Organisation declarations, can put your services in a wider context, and help to create a sense of the inevitability of change.

Many staff members will be rightly cautious about large scale service changes. They may fear that changes are motivated by cost-cutting reasons, or that any such changes will leave people with mental illness liable to neglect. Such reasonable concerns need to be addressed directly, explaining in good faith why the new model of care is expected to provide better services. If budget changes are planned, they need to be made explicit. Often, after lengthy discussion, a number of staff will make it clear that, despite all the arguments for developing community services, they wish to remain working on in-patient units. In the balanced care model that we have described 2,10, there is a clear need for some (limited) acute in-patient facilities (usually in general hospitals) and there is a continuing need for specialists in acute in-patient treatment and care.

Challenge 5. Opposition from neighbours

Neighbours will often have reservations, or may protest against plans for new mental health facilities in their locality. There is a dilemma here between maintaining the confidentiality of patients, and so not telling neighbours in advance about the new residents, or trying to engage support of neighbours through information-sharing and consultation. Our view is that involving neighbours throughout the process of developing of services is usually the better long-term option.

It is often the case that when new projects are proposed within local communities, neighbours are opposed to such developments. Often this is because their limited knowledge about people with mental illness leads them to believe (wrongly) that any new mental health facility will bring with it a high level of risk, especially to their children 11. Despite this, many staff feel strongly that it is unhelpful to inform neighbours about the nature of a new community mental health facility in advance. Indeed, a decision not to give advance notice to neighbours can be seen as a way to avoid marginalising people with mental illness and related disabilities. There is no research base to help decide what to do in these situations, and in England, for example, it is common to inform neighbours in advance of the planned new service 12, often with many detailed meetings to address the concerns of neighbours. In our view, whatever the stage at which neighbours are informed, or become aware of the nature of the new facility, it is very important to take seriously their views. The ultimate aim will be to foster good neighbourly relations between people in the community care home and local residents.

Challenge 6. Financial obstacles

Although some policymakers, politicians or managers may see a move from hospital towards community care as a cost saving process, the experience of many countries is that money can only be saved by reducing the quality of care. It is therefore essential to monitor very closely the resources available to mental services, and to ensure that no monies mysteriously become lost in the process. One very valuable asset that can be released in changing the system of care is the value of land and buildings occupied by the large psychiatric hospitals. It is important to establish whether you can retain the money realised by their rental or sale to use for new staff and facilities. Wherever possible keep maximum flexibility in your mental health service budgets, and share these budgets with other agencies if this is an advantage to you.

Money is critical for mental health care. The purpose of the balancing hospital and community care is not to reduce the mental health budget. Rather it is to provide the best possible services with the resources available. In relation to moving long-stay patients from large psychiatric institutions to community facilities, the evidence from evaluations carried out in high resource countries shows that, where this is done reasonably well, it is overall cost-neutral 5. Indeed, there is no evidence that comprehensive mental health care costs less than long-stay psychiatric hospitals. On the other hand, there is no support from research for the common idea that block treatment in hospital is more cost-effective (unless it is lower quality care). At the same time, such service changes can be used as the occasions to make budget cuts.

One important financial issue is whether the total resources available for mental health care, for example for a local area, can be identified and protected (sometimes called “ring-fenced”). This is a very important issue, because where such budgetary protection is not maintained, then it is very common to see mental health budgets lost to other medical or surgical departments. More positively, the resale value of the land and buildings occupied by long-stay hospitals depends upon its location, condition and reputation, and often the value cannot be realised to use for other mental health services locally.

Challenge 7. System rigidity

One of the organisational features of large institutions is their hierarchical nature and the rigidity of their procedures. In community systems it is possible to adopt a more flexible approach to how staff are used. For example, secondments to other services, or periods of shadowing key members of staff can be useful to develop new skills and roles. Sometimes it is helpful to make joint appointments, where one post is shared between two organisations.

A frequently occurring problem when initiating community-based services is that the financial system underpinning clinical care is hospital based. For example, reimbursement to the mental health care provider may be on the basis of the number of beds occupied. In this case establishing a new community mental health team may be difficult, as there is no tariff or currency that will allow for the costs to be paid. In such cases it is necessary to create new categories of payment, but as these financial changes are usually very slow to take place, in the interim considerable flexibility is needed on all sides to allow new services to start up using the old financial rules. For example, a day hospital may be paid for the number of people attending each day, rather than for the number sleeping on the unit each night. While this flexible approach can help new teams or services to start up, they rely on good will and are vulnerable to changes in staff or political will. So, it is vital to institutionalise new financial rules as soon as possible to explicitly pay for the new categories of community care services.

Challenge 8. Boundaries and barriers

As community mental health systems tend to be more complex than their hospital predecessors, it is vital that senior staff can maintain an overall view of the system as a whole. Individual components of service, for example clinical teams, must not be allowed to define their roles in isolation. They must be required to negotiate with other clinical teams to agree how they will put into practice a joint responsibility for all those patients who need to care. One way to manage inevitable ongoing boundary discussions about who does what is to have regular and frequent meetings between the leaders of all the clinical teams which serve a particular area.

It is common to hear those who wish to develop “seamless” care. In fact any local service will necessarily include many different teams or services. Every boundary between different teams is a potential point for boundary disputes or service dysfunction, for example communication problems between an in-patient ward and a community mental health team. It is therefore necessary to create methods to minimise the disruptive effect of friction at such boundaries. Ways to do this include arranging for staff from one team to “shadow” their equivalent person in the other team, for example for a day or for a week. Another mechanism is to arrange staff rotation schemes, so that for example doctors or nurses work for one or two years in a hospital team, and then for a period in a community mental health team. The central issue is to promote ways for staff in each part of the system as a whole to understand the perspective of their colleagues in other teams, and to want to work together to solve problems which detract from the quality of clinical care.

Challenge 9. Maintain morale

The morale of mental health staff is usually found to be low wherever the study takes place. In addition, morale may be particularly low during times of system change. Managers may therefore need to make special arrangements, during these transitional periods, to boost morale, for example by paying attention to social events, by communicating successes, and by taking any excuse to throw a party.

Creating and maintaining high staff morale is universally recognised as vital to an effective mental health service, both the morale of individual staff members, and developing a strong reputation as a modern and professional team. One way to enhance team morale is to visit other centres, for example abroad. This can have several advantages: to realise that one’s own problems occur also elsewhere, to promote better social contact between staff team members, to learn directly from the practical experiences of others, and for the staff to be given some valuable reward for their commitment to the ser- vice, often over years or decades. There are considerable cultural differences in what activities raise staff morale: in some settings it may be frequent staff parties, in others it may be close attention to accurate job descriptions, aiming to reduce role blurring. In each case the starting point is for team leaders to be able to assess the morale of their team, and to understand what is necessary to keep this reasonably high most of the time.

Challenge 10. What is the right answer?

There is no right answer! Although there are a large number of mental health service models and theories, these are best seen as suggestions for what might help you in your particular situation. Maintain as much flexibility as you can in the new system, because you will make mistakes and need to change the service as it develops. The best guide about whether your mental health services are going in the right direction is the feedback you receive from service users and family members about how far their preferences and needs are being responded to.

It is common for those starting a process of mental health service change to believe that someone else, in some other place, knows exactly what should be done. In our view each local setting needs to find its own specific way to better mental health care. A vital guide to doing this will stem from supporting, seeking and using feedback from ser- vice users and family members. Feedback can be based on comments or complaints received, or it can be formally invited, for example with service user satisfaction surveys. It is often the case that, before feedback can be received, statutory services need to invest time and money to support the creation and initial survival of service user groups. In this way, over time, advocacy groups can join forces with staff to lobby for more resources allocation to mental health care, and often politicians are more moved and persuaded by individuals who have personal experience of mental illness than by staff, whom they may suspect of being motivated for reasons of self-interest.

LESSONS LEARNED

What are the overall lessons that we feel we have learned that others may be able to learn from? First, robust service changes, improvements that will last, take time. Part of the reason for this is that staff will need to be persuaded that change is likely to bring improvements for patients, and indeed their scepticism is a positive asset, to act as a buffer against changes that are too rapid or too frequent. Another reason for not rushing change is that in order to succeed one is likely to need the support of many organisations and agencies, and they need to be identified and included gradually, at the start of each cycle of service changes. Those which are, or which feel, excluded are likely to oppose change, sometimes successfully. Further, in situations where health service changes may be a topic for political debate, then it is usually necessary to build a cross-party consensus on the mental health strategy, so that it will continue intact if the government changes. Again this will often take time to achieve.

Time is also needed to progress from the initiation stage of a change to the consolidation phase. Typically at the early stages of service reform a charismatic individual or small group will champion the main proposals, and recruit support from stakeholder groups and from others with influence within the health care system. In Eastern European countries, for example, the medical director/superintendents of the psychiatric hospital will in practice hold a veto for or against change 4. But, after a series of initiatives, such as creating mental health day centres in the larger cities of a country, the mental health system needs to systematise these changes so that they can continue over many years. In this subsequent phase, it is often true that charismatic leaders go on to new challenges, and the people who are most useful are those who are able to patiently consolidate the new organisation, and to establish consortia that are viable in the long term. For example, these less visible individuals will set up proper supervision for staff, ensure the regular maintenance of buildings, arrange for personnel to undergo regular training, set up multi-agency working groups to identify and fix day-to-day problems in the running of the services, establish and take part in consultation or partnership meetings with service users/consumers and with family members, and monitor that the services run properly within their allocated budgets.

While maintenance activities of a newly established system may be less attractive to innovators, in fact this consolidation is vital to make services robust and able to survive and thrive in the long term. This will not usually require a single high-profile leader, but rather a consortium made up of a wider group of stakeholders who need to cooperate in providing all the service components within the wider system of care. The successful completion of these policy decisions, and their implementation on the ground, will often also need organised and repeated lobbying by a coalition of stakeholder groups, to build sufficient political pressure, for example for modernised mental health laws. An example of the timescale required is the pattern of service changes in Verona, Italy over the last 30 years, derived from the local case register, founded in 1979 13 (Figure 1). As the number of psychiatric beds has progressively declined, so the provision of day care, residential care, and out-patient and community contacts has steadily increased over many years.

Figure 1.

Patterns of mental health service provision in Verona, 1979-2006

The second overall lesson is that it is essential to listen to users and families’ experiences and perspectives. Everyone involved needs to keep a clear focus on the fact that the primary purpose of mental health services is to improve outcomes for people with mental illness. The intended beneficiaries of care therefore need to be, in some sense, in the driving seat when planning and delivering treatment and care. This is a profound transformation, changing from a traditional and paternalistic perspective, in which staff were expected to take all important decisions in the “best interests” of patients, to an approach in which people with mental illness work, to a far greater extent, in partnership with care providers. This requires a fundamental re-orientation for staff, for example to be and to feel less responsible for deciding all aspects of a patient’s life. It also requires that people with mental illness become able to express their views and expectations of care. At the outset this may be very difficult, for example for people who have lived for many years in psychiatric institutions, where their views and preferences were rarely sought or valued. This will often require a stage of support, for example from advocacy workers, so that such individuals can in a sense be re-activated to recognise and express their own points of view. One consequence is that while service quality may improve during a period of developing community mental health services, commonly the expectations of the people being treated rise even faster, leading to a paradoxical decrease in satisfaction. While staff may interpret this as a criticism of the care they provide, another way of looking at this is that such dissatisfaction or complaints are in fact very clear signals of which parts of the service need to be improved next. In other words service users are the best experts.

The third lesson that emerges from this overview is that the team managing such a process needs clear expertise to manage the whole budget and that the risks are high that services changes will be used as an occasion for budget cuts. Having a protected budget is necessary but not sufficient, as it is also vital to be able to exercise flexibility within the overall budget, typically to re-use money saved by reducing the use of in-patient beds for community mental health teams, or occupational or residential services. When such a financial boundary (sometimes called a “ring fence”) for mental health funds is not established and fiercely maintained, then money can easily be diverted to other areas of health care. In other words, financial mechanisms need to be created which ensure that money follows service users into the community.