1.1 Care across all phases [61]

NICE Guidance Schizophrenia Core interventions in the treatment and management of schizophrenia in primary and secondary care. Clinical Guideline 1. December 2002.

This part of the guideline deals with care across all phases of the illness. Given the considerable variation in both the provision of care and in the degree of service user focus between different services, the GDG (Guideline Development Group) formed a series of GPPs (Good Practice Points) or recommendations to guide the overall provision of care. These include an optimistic approach, getting help early, comprehensive assessment and working in partnership with service users and carers. Also included are issues such as consent, the provision of information, language use and advance directives. These are important issues to address whenever service users and/or carers make contact with professionals and services.

1.1.1 Optimism

The effects of schizophrenia on a person's life experience and opportunities are considerable; service users and carers need help and support to deal with their future and to cope with the changes the illness brings.

1.1.1.1 Health professionals should work in partnership with service users and carers, offering help, treatment and care in an atmosphere of hope and optimism. (GPP)

1.1.2 Getting help early

For most people experiencing a schizophrenic breakdown, the level of distress, anxiety and subjective confusion, especially during first episodes, leads to difficulty in accessing services.

1.1.2.1 Service users and their relatives seeking help should be assessed and receive treatment at the earliest possible opportunity. (GPP)

1.1.3 Assessment

The purpose of this guideline is to help improve the experience and outcomes of care for people with schizophrenia. These outcomes include the degree of symptomatic recovery, quality of life, degree of personal autonomy, ability and access to work, stability and quality of living accommodation, degree and quality of social integration, degree of financial independence and the experience and impact of side effects.

Long-term follow-up studies suggest that, despite the severity of the illness, up to a third of people who develop schizophrenia make a full recovery, and only 10% appear to deteriorate throughout their life (Bleuler 1978).

1.1.3.1 The assessment of needs for health and social care for people with schizophrenia should, therefore, be comprehensive and address medical, social, psychological, occupational, economic, physical and cultural issues. (GPP)

1.1.4 Working in partnership with service users and carers

The families of people with schizophrenia often play an essential part in the treatment and care of their relative, and with the right support and help, can positively contribute to promoting recovery. Parents of people with schizophrenia often feel to blame, either because they have 'passed on' the genes causing schizophrenia, or because they are 'bad parents'.

1.1.4.1 Health professionals involved in the routine treatment and management of schizophrenia should take time to build a supportive and empathic relationship with service users and carers; this should be regarded as an essential element of the routine care offered. (GPP)

1.1.4.2 Clear and intelligible information should be made available to service users and their families about schizophrenia and its possible causes, and about the possible role families can have in promoting recovery and reducing relapse. (GPP)

1.1.5 Consent

Whatever treatments are offered, it is essential to engage the service user in a collaborative, trusting and caring working relationship at the earliest opportunity. Professionals should take into full account the particular nature of schizophrenia:namely, that the illness may affect people's ability to make judgements, to recognise that they are ill, to comprehend clearly what professionals might say to them and to make informed decisions about their treatment and care.

1.1.5.1 Health professionals should make all efforts necessary to ensure that a service user can give meaningful and properly informed consent before treatment is initiated, giving adequate time for discussion and the provision of written information. (GPP)

1.1.6 Providing good information and mutual support

1.1.6.1 Health professionals should provide accessible information about schizophrenia and its treatment to service users and carers; this should be considered an essential part of the routine treatment and management of schizophrenia. (GPP)

1.1.6.2 In addition to the provision of good-quality information, families and carers should be offered the opportunity to participate in family or carer support programmes, where they exist. (GPP)

1.1.7 Language and culture

1.1.7.1 When talking to service users and carers, health professionals should avoid using clinical language or keep it to a minimum. Where clinical language is used, service users and carers should have access to written explanations. (GPP)

1.1.7.2 All services should provide written material in the language of the service user, and interpreters should be sought for people who have difficulty in speaking English. (GPP)

1.1.8 Advance directives

1.1.8.1 Although there are limitations with advance directives regarding the choice of treatment for individuals with schizophrenia, it is recommended that they are developed and documented in individuals' care programmes whenever possible. (NICE 2002)

1.1.8.2 When advance directives have been agreed, copies should be placed in primary care and secondary care case notes/care plans, and copies given to the service user and his or her care coordinator. If appropriate, and subject to agreement with the service user, a copy should be given to his or her carer. (GPP)