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Ashok Roy (Brooklands, Coleshill Road, Marston Green, Birmingham B37 7HL) is a consultant in learning disability psychiatry in North Warwickshire and North Birmingham Community Trusts. He is Medical Director of North Warwickshire Trust and a senior clinical lecturer in the Department of Psychiatry at Birmingham University. His interests include service development, access to primary care services, phenomenology of depression and ethical issues in learning disability, such as sterilisation and consent.
For nearly three decades, closure of large psychiatric and learning disability hospitals has continued and more people with mental health needs remain in the community. With this continuing decrease in hospital provision, there has been an increased focus on the development of systems of safe care and effective treatment for people with significant mental health problems living in the community. Attempts to make this a central plank of mental health care have been reflected in legislation and guidance produced by the Department of Health. The Care Programme Approach (CPA) was introduced in 1991 after the publication of HC (90) 23/LASSL (90) 11 and subsequent guidance from the White Paper Caring for People (Department of Health, 1990).
The CPA was to be implemented by health authorities and trusts and was to assess people with mental health needs and focus on the direct provision of services. This was to be complemented by care management, in which local social services departments were to take lead role. Care management was usually the responsibility of social workers who carried out an assessment of needs. The care plan was followed by the creation of a care plan. Social workers were given access to resources with which care was purchased. This was then monitored and altered to meet the changing needs of the individual. The main elements of the CPA are shown in Box 1
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| Box 1. Components of the Care Programme Approach
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Shepherd et al (1995) argued that the application of CPA to everyone in contact with specialist mental health services Òmakes targeting the most severely disabled extremely difficult". They pointed out that to reduce duplication, confusion and inefficient use of resources, the system should be rationalised into a single system combining the direct service elements of the CPA and the purchasing elements of care management. Marshall (1996) described the American concept of case management as a combination of some aspects of care management and CPA. He felt that evaluation of care management had Òprovided little evidence of efficacy". The CPA, according to him, might have achieved some Òapproximation to assertive community treatment" with Òproper funding and guidance". Instead, it had seen Òlack of funding, mushrooming paperwork and extension to all psychiatric patients" without being fully evaluated. Easton & Oyebode (1996) emphasised the logistical difficulties posed by CPA based on their experience of over 7000 patients. Tyrer et al (1995) gave evidence of increased hospitalisation of patients under care programming in a randomised control trial. Phelan (1996) suggested that this might indicate that CPA was helping services maintain contact with patients and highlighting unmet need. Increased hospitalisation might reflect increased patient contact with services and not necessarily mean a failure in the CPA. The publication of Building Bridges and The Spectrum of Care (Department of Health, 1995, 1996) saw the appearance of further guidance on improved inter-agency working and an audit pack for the CPA. White et al (1997), who provided additional guidance on eliciting risk, also highlighted risk management as an integral part of CPA.
In summary, although the CPA and care management were regarded as useful concepts, there were concerns expressed about the manner of their implementation.
| Modernising the CPA |
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It is anticipated that these changes will be officially implemented from April 2001. Local services can abolish supervision registers earlier if they have robust CPA arrangements in place.
The integration of CPA and care management should, therefore, lead to a seamless service having:
Features of an integrated system of the CPA and care management include: a single operational policy; joint training for health and social care staff; common risk assessment and management processes; shared information systems across health and social care; and agreement on the allocation of budgets.
The Mental Health National Service Framework sets a standard which requires that those on the CPA should be able to access services 24 hours a day, 365 days a year.
| Need for CPA in the field of learning disability |
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In an important national survey of learning disability services, Patton found that of 80 responses to a questionnaire regarding the use of CPA in learning disability services, only 29 were providing CPA (details available from the author upon request). Of this group, 24 included a risk assessment and 12 used a specialised system. A further 15 provided CPA for people with dual diagnosis using mental health databases, though in very small numbers. Thirty-six were not providing CPA. One of the reasons for this was that commissioners and local managers did not ask them to. Many were planning to use the CPA soon. The CPA has been seen in some services as relevant for the general population and not for people with a learning disability. Also, people with learning disability in contact with services do not necessarily have mental health needs and therefore the CPA is not relevant for them. She concluded that people in learning disability services needed more support to use CPA and incorporate good practice of care planning into the CPA process.
For people with a learning disability with mental health needs to derive maximum benefit from the CPA, professionals working in community teams, hospital-based teams and other settings must be in broad agreement with the criteria for eligibility for the CPA. Services must guard against the process becoming bureaucratic, so that it remains of benefit to clients. All people with a learning disability identified as having a mental health need must be assessed for need for the CPA. Some of the characteristics of people with a learning disability who are likely to be on an enhanced CPA are shown in Box 2
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| Box 2. Common characteristics of people with learning disabilities on an enhanced CPA
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| Severe mental illness |
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They may display florid symptoms or suffer from a persistent enduring condition, and/or have suffered recurrent crises leading to frequent admission, and/or present significant risk to their own safety or that of others.
This means that individuals with a primary diagnosis of learning disability without any additional mental health need will not meet the criteria for the CPA described above. People with multiple physical disability would benefit from care planning but would not be eligible for the CPA.
| Risk assessment |
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| Box 3. Risk assessment questions
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A positive answer to any of these questions represents the presence of clinical risk. Other significant factors include history of poor compliance with treatment, recent discharge from hospital, having been detained under the Mental Health Act, suffering from certain types of personality disorder, especially those with prominent paranoid, emotionally unstable, impulsive and psychopathic traits. Risk factors are further exacerbated if the individual has poor social and family support networks. At the end of risk assessment, a judgement needs to be made about the complexity of the problems faced by the individual with a learning disability, the consequent complexity of the service needed and the risk to and from the individual.
Once the risk assessment is done and a decision is made to proceed with the CPA, care planning must be carried out.
| Care planning |
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| Box 4. Domains for assessment of clinical need
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Psychiatric and behavioural problems
The main psychoses, neuroses and personality disorders must be looked for, and predisposing (e.g. family history), precipitating (e.g. bereavement) and maintaining factors (e.g. inadequate treatment) must be understood. This usually involves input from various professionals, such as psychiatrists, psychologists and community nurses. Special attention must be given to looking for longstanding problems commencing in childhood, for example, attention deficit hyperactivity disorder.
Case example
Richard was a 19-year-old man with moderate learning disability who had been showing inappropriate sexual familiarity towards female members of staff at his new college. This was attributed to lack of social skills. Only on closer assessment was it learnt that his behaviour had been associated with sleep disturbance and periods of preoccupation and withdrawal. His mother was found to have a chronic schizophrenic illness and she was undergoing treatment. Richard was diagnosed to be suffering from schizophrenia and within 3 months of starting treatment he had returned to college. He received regular out-patient supervision from the consultant and depot injections and support from the community nurse.
Developmental disorders
Autism (pervasive developmental disorders) frequently coexists with learning disability. Berney (1997) quotes prevalence rates of severe learning disability in autism the range of 27-70%. Scragg & Shah (1994) found that the prevalence of Asperger's syndrome was greater in a special hospital than in the general population. It is important to look for autistic features in individuals, as they are often missed in adults. The characteristic range of disabilities in autism (including communication difficulties, ritualistic behaviour, poor empathy and a difficulty in generalising experience from one setting to another) make it difficult for people with the disorder to derive benefit from programmes not properly tailored to their needs.
Case example
Peter was a 31-year-old man with a mild learning disability who had a long history of getting into conflict where he worked, in a sheltered industrial therapy unit. Most recently he had assaulted a member of staff who had intervened when Peter threatened to attack another service user. He was remanded to a local psychiatric unit. On closer assessment, it was found that he fitted all the criteria for Asperger's syndrome. It was then noted that the staff had not known this and had not told him of any changes in the service early enough to prepare him for the change. He found this very anxiety-provoking. When the relevant changes were made and the staff received some training Peter was reintroduced to his job.
Intellectual impairment (degree of learning disability)
It is essential to determine if the level of learning disability is mild, moderate or severe. This can be clinically determined by measuring the range of ability an individual has on a variety of areas in such as self-care, communication, cognitive skills and social skills. This helps to plan the appropriate level of long-term support and assistance individuals may need. Communication therapists, occupational therapists and psychologists may be called upon to provide further help with assessment and subsequent care planning. People with mild learning disability may find themselves falling between the learning disability and general adult services. In keeping with spirit of the CPA, their complex mental health needs should be managed jointly between the generic mental health and learning disability services. Some individuals with borderline learning disability and schizophrenia may show a cognitive decline during their illness.
Communication assessment can reveal a range of difficulties in both expression and comprehension. Specific problems need to be identified if mistakes are to be avoided in giving information. Semantic and pragmatic disorders are being increasingly identified in people who appear to be able to hold a conversation but who take in only a fragment of what is said to them. The frustrations caused by these difficulties can lead to into behavioural problems.
Physical disorders
It is important to diagnose and plan care and treatment for associated physical conditions which may be of aetiological significance, such as Down's syndrome, or contribute to the existing disabilities, such as cerebral palsy or sensory disabilities, or which may be coincidental, such as obesity. The management of these conditions forms a vital part of the final care plan.
Epilepsy is commonly associated with learning disability and mental health problems. The complex relationships between these disabilities needs to be understood in each case for a successful care plan to be drawn up. Diabetes and thyroid disease can also exacerbate mental and behavioural problems. Existing behavioural phenotypes need to be identified, as they are often associated with certain behaviours, such as self-injury in Cornelia de Lange syndrome or hyperphagia and dysphoria in Prader Willi syndrome.
An evaluation must be made to detect abnormalities in vision and hearing, as these can affect the efficacy of treatment.
The use of the CPA for the management of physical comorbidity has been proposed recently by Santhouse & Holloway (1999). They advocate physical review and screening, as well as close liaison with general practitioners.
Psychosocial situations
These encompass a variety of situations, such as problems related to employment, housing and economic circumstances, social environment, childhood adversity and upbringing, family circumstances and lifestyle. Difficulties in caring can result from inability of the primary support group to provide good physical care or a positive emotional atmosphere conducive to optimal development. Other problems include imminent breakdown of residential placement and possible homelessness, adverse life events such as bereavement, or loss of social and leisure opportunities.
An assessment of an individual with learning disability and mental health needs must be systematic in covering all these areas. Problems identified in each area should result in identification of corresponding service need, leading to a better care plan. The characteristics of a good care plan are shown in Box 5
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| Box 5. Characteristics of a good care plan
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The principles of effective care planning are illustrated by the following case example.
Case example
Lily is 42-year-old woman with Down's syndrome who lives with her elderly parents. She attends a day centre and goes there by coach. In the last two months, she had been aggressive to other clients both on the coach and at the centre, which led to her being excluded. Her social worker referred her to the community learning disability team. The community nurse found the parents exhausted trying to contain Lily's aggression and through discussion with her general practitioner (GP) initiated a referral to the learning disability psychiatrist.
Lily was admitted for in-patient assessment, where it was found that she was low in mood. She was waking up early, non-communicable, frequently irritable and had little interest in her favourite activities such as using the computer. She had to be encouraged to look after her personal needs. She was diagnosed with a moderately severe depressive illness and hypothyroidism in addition to a severe learning disability.
Her care plan therefore covered the following areas:
At a multi-disciplinary review meeting attended by medical staff, nurses, communication therapists, occupational therapists, social worker, Lily and her parents, it was felt that Lily had responded well to treatment with antidepressants and thyroxine and was ready to make a fresh start. It was also agreed that she would find it more stimulating and enjoyable living in a staffed group home with friends, visiting her parents regularly. Staff from the day centre were happy for Lily to resume her attendance there once Lily was discharged from hospital.
Based on the assessment, the social worker found a suitable group home, which Lily visited and liked. After a trial period, Lily moved on a permanent basis. The social worker who had a central role in planning Lily's life agreed to take on the responsibility of care coordinator.
| Role of care coordinator |
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| Box 6. Attributes of a care coordinator
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| Training issues |
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The responsibility for ongoing training lies with health and social services through the CPA lead officer working across agencies.
| Crisis and contingency planning |
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| Setting, context and supports |
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Information needs to be shared across health, social services and the criminal justice systems. It must be remembered that to make CPA effective it must be provided in a coordinated manner wherever the individual lives. This can happen only if relevant information is available to whoever is providing the service. Respect for confidentiality needs to be balanced against issues of safety and public interest. This can prove challenging when planning and providing services for people with a learning disability who have committed offences and who have mental health problems. Information systems must, in addition to providing accurate and up-to-date details of clients, help with audit and future service planning. While integrated information systems may take time to develop, local inter-agency agreements are the key to improving the quality of services.
| Conclusion |
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It is now imperative for primary care groups and trusts, learning disability services, health authorities and social services along with the criminal justice system to use the new CPA to provide more coordinated services based on both assessed clinical need and safety. The improved frameworks now available should reduce duplication and increase the provision of seamless services with the clients and their carers at its centre.
| Multiple choice questions |
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| References |
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Corbett, J. (1979) Psychiatric morbidity and mental retardation. In Psychiatric Illness and Mental Handicap (eds P. Snaith & F. E. James), pp. 1125. Ashford: Headley Brothers.
Department of Health (1990) NHS and Community Care Act. London: HMSO.
Department of Health (1990) Caring for People. London: DoH.
Department of Health (1995) Building Bridges. A guide to Arrangements for Inter-Agency Working for Care and Protection of Severely Mentally Ill People. London: DoH.
Department of Health (1996) The Spectrum of Care. London: DoH.
Department of Health (1998a) A First Class Service: Quality in the New NHS. London: DoH.
Department of Health (1998b) Signposts for Success in Commissioning and Providing Health Services for People with Learning Disabilities. London: DoH.
Department of Health (1999a) A National Service Framework for Mental Health. London: DoH.
Department of Health (1999b) Effective Care Co-ordination in Mental Health Services: Modernising the Care Programme Approach. London: DoH.
Easton, C. & Oyebode, F. (1996) Administrative demands of care programme approach. British Medical Journal, 312, 1540.
Khan, A., Cowan, C. & Roy, A. (1997) Personality disorders in people with a learning disability: a community survey. Journal of Intellectual Disability Research, 41, 324330.
Lund, J. (1985) The prevalence of psychiatric morbidity in mentally retarded adults. Acta Psychiatrica Scandinavica, 72, 563570.[Medline]
Marshall, M. (1996) Case management: a dubious practice. British Medical Journal, 312, 523524.
Moss, S., Patel, P., Prosser, H., et al (1993) Psychiatric morbidity in older people with moderate and severe learning disability. I: Development and reliability of the patient interview (PAS-ADD). British Journal of Psychiatry, 163, 471480.
Phelan, M. (1996) Care management. British Medical Journal, 312, 15391540.
Reid, A. H. & Ballinger, B. R. (1987) Personality disorder in mental handicap. Psychological Medicine, 20, 983987.
Santhouse, A. & Holloway, F. (1999) Physical health of patients in continuing care. Advances in Psychiatric Treatment, 5, 455462.
Scragg, P. & Shah, A (1994) Prevalence of Asperger's syndrome in a secure hospital. British Journal of Psychiatry, 165, 679682
Shepherd, D., King, C., Tilbury, J., et al (1995) Implementing the Care Programme Approach. Journal of Mental Health, 4, 261274.
Tyrer, P., Morgan, J., van Horn, E., et al (1995) A randomised controlled study of close monitoring of vulnerable psychiatric patients. Lancet, 345, 756759.[CrossRef][Medline]
White, K., Roy, D. & Hamilton, I. (1997) ABC of mental health: community mental health services. British Medical Journal, 314, 1817.
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