Living With Schizophrenia: Recovery or remission ?

History of Project

In 1999, Panels comprising Maori, clients, family members, and professional staff from within the learning-set visited and commented on the services in each district. The comparative analysis of services resulted in the compilation of a list of 10 Key Features (outlined below) that people who use or provide the services say work well. The good practices are not pie in the sky but can be found in the South Island: not everywhere or all in any one place.

In the next phase of the project there was thorough consultation on the 10 Key Features, and a questionnaire similar in format to the Mental Health Standards was tested across the region. Both documents were received with complete accord and approval.

Having agreed the appropriate style of service, the next step was to assess where each service stands in relation to the 10 Key Features and the steps required to bring them closer to them.

To explore how this assessment and planning exercise might work, Case Managers in 4 localities were asked to assess what was working for their long-term clients and what called for improvement.
The outcome of this pilot exercise revealed gaps in service provision that could only be detected at ground level.
Shortcomings were sometimes due to the lack of alternatives acceptable to some consumers. However, in some instances problems appeared to be created by the way services are locally organised
Though there are service elements common to all providers (e.g. community teams, crisis teams, acute units etc), the way they operate and link to one another varies considerably between districts; and sometimes, between localities within the same district.

The programme for 2002 proposes a more thorough trial of service evaluation (the 10th of the Key Features) a process that has been called 'Knowing the People Planning', to emphasise that the focus is upon the experience of consumers.

One final comment: the process has had effects beyond those anticipated from testing hypotheses and none more so than in the definition of the subject population.

High Support Needs or Long Term Clients?

Most mental health service clients are treated and referred to the care of their GP within a few months. They and their families learn how to manage the condition though it may never go completely away (be cured). There is sufficient information, access to primary care, and resourcefulness to manage without 'break-down' and recourse to emergency secondary care support.

Nevertheless, there are a small number of consumers who return time and again for secondary care help often without notice and over a period of many years.
The term 'high need clients' is one description attached to them.
On the other hand, they might be thought of as people for whom the services have so far failed to provide effective treatment and advice and that can only respond when a sufficient degree of 'illness', 'distress' is apparent to qualify for the attention of emergency services.
Though the consumers are often well-known to the practitioners, there may be no provision in a local system to recognise the returning consumers and their particular and personal needs.

Services of this kind have no way of learning from the experience of their clients. This inability may even contribute to clients becoming 'high support needs patients' and generate the very crises they have to deal with. 'High support needs' suggests the problems are entirely dependent upon the client.
'Long Term' clients allows for the problems being shared between those caused by a persons condition, and contributory factors in the way 'services' operate.

Some Characteristics of Long Term Clients

They usually need continuous medication for their mental health condition. They may experience sporadic bouts of acute ill health or crises involving hospitalisation or some alternative treatment. Many clients also have social problems that may or may not be a consequence of their mental health condition.

Lack of occupation, poverty, poor housing and social isolation may bring the client in contact with several social agencies and mental health services (drug and alcohol, forensic etc).
Personal solutions are needed because the mix of health and social factors differs for every individual and at different times in a person's life.
Diagnosis is too general a to indicate common solutions appropriate to all with the same illness classification.
For example, someone with Schizophrenia will have a different range of needs if the partner and occupation that has sustained their life become removed for some reason.
Every person is different and same person has different needs at different times.
They have grown accustomed to seeking assistance from secondary mental health services and so it seems simpler, at this stage, to regard them as 'long term clients' rather than any other description.

It may be that about 1% of the adult population use services on a long-term basis. From a variety of sources it appears that around half this number is in active contact with secondary care services at any time. Relatively few consumers are in continuous contact with services. Long term clients are usually well known to clinicians and within the group is the number may not be large the demands a relatively few individuals make on services can, at times, be considerable.

Effective health and social rehabilitation can improve the quality of their lives.
Cure is rare but improvement is possible for those with conditions once thought to be chronically intractable. Clients can make recovery and learn how to reduce the bad effects of crises. Conversely, clients' health can deteriorate. Poorly organised mental health services can contribute to this.

Room for improvement Clients and their families complain of mental health services -

- that focus on acute care and crisis resolution. and only respond in extreme crisis rather than recognising and averting known problems; - where the client meets different medical teams and key workers every time and the frustration of being treated as a 'new case' on each occasion;
- that are fragmented with the client passed from one to another or treated simultaneously by two or more and having to attempt to co-ordinate services that may not communicate well with each other, falling into the gaps between services;
- that do not maintain a long-term relationship. Clients complain of being discharged when it is known their problems will recur. There is also concern when clients who do not maintain contact are not actively followed-up by Community Teams to ensure their treatment is continued.
Not being recognised as a frequent user can be unhelpful and harmful for long-term clients.

The Public complains of clients who are clearly in need but who have lost contact with services and help arrives only when matters have reached the stage of calling the police.

1 Personal growth the focus

1. ·Commitment to the aim of recovery and personal improvement enabling clients to be as independent as possible.
2. ·This commitment guaranteed by the Provider and not dependent only upon the enthusiasms and personal interests of individual staff members.
3. ·Client involvement and contribution in their own care is essential and valued. They are engaged in the therapeutic process and not 'managed' or 'supervised' by professionals.
4. ·Acceptance that the process may be slow and setbacks may occur.

2 Enrolment to a Provider Case-list - knowing the people

1. ·A case list of known long-term clients and those with high support needs.
2. ·Discharge criteria based on record of recovery and with easy access for return to care and support if personal circumstances change.

3 Accountability for Clients - the Team Casework approach

1. ·Shared responsibility for the clientele - team casework in which all team members contribute to assessing needs and arranging for them to be met.
2. ·Team members know the clients. Clients know all the team members.
3. ·Team accountability- a recognised senior member (manager, co-ordinator) accountable to the Provider for managing the caseload of the team, the team's conduct of its clinical responsibilities, and the care of those on the case list.
4. ·Team accountable to clients - a nominated team member for each client acceptable to him or her. This avoids the possibility of clients falling between the cracks because everyone thinks somebody else is dealing with the matter. Effective and co-ordinated communication with daily or regular team updates covering all local mental health services.

4 contact with clients and their families come-what-may

1. ·'Did not attend' or 'was not at home' not accepted as reasons for losing contact. Teams seek out their enrolled clients who do not maintain contact.
2. ·Staying in touch and the focus of continuing care when client is in contact with other health and social services.
3. ·Maintaining contact when a client makes good recovery but for whom a badly managed crisis period could spoil years of effective rehabilitation.
4. ·Clients and families shown how and encouraged to get directly in touch with the team when they need help or advice.

5 Health advice

1. ·Treatment - finding a regime, from the wide range of medication and cognitive therapies now available, to suit each individual.
2. ·Good communication with general practitioner and other health services with which client involved.

6 Social Supports

1. ·Help in overcoming social problems, housing, income, and occupation. Social circumstances that result in isolation, low self-esteem, and poverty are factors that can contribute to crisis and ill health.
2. ·Provision of needs assessment service or close co-operation with independent providers.

7 Co-ordination point for health and social services.

1. ·Though many agencies, services and individuals may contribute to the care and support of an individual client, the Community Team is recognised by clients and these services (including acute hospital care) as the focal point for service co-ordination.

8 Anticipating Crisis

1. ·Emphasis on crisis avoidance.
2. ·Training clients to recognise the signs of onset: when and how to call for help.
3. ·Making specialist crisis services alert and responsive to the needs of registered clients.
4. ·Some clients who have continuing contact with the service may enjoy stable social lives, families and jobs. They remain on the register because of their potential to do badly if there is not a prompt and appropriate response at times of crisis.
9 Personal review

1. ·Full needs assessment and personal treatment and support programme for each enrolled client. 2. ·Six monthly review of assessment and progress.

10 Knowing the People Planning (KPP)

1. ·Annual review of the team's work and client outcome by such factors as: reduction of hospital admission and length of stay; client satisfaction; meeting needs specified in clients' care plans. 2. ·Evaluating client experience as the basic information for mental health service development - what works and what improvements need to be made in the array of local provision and support and, especially, how services are organised and managed. "