NHS continuing care

In the UK, continuing care funding is provided by the NHS for people of any age with complex care needs who meet specific criteria determined nationally by the Department of Health (DH, 2012a). Some people under the care of old age psychiatry services will meet these criteria due to their on-going mental health needs, and will require long-term care (Banerjee and Chan, Reference Banerjee and Chan2005). Within an old age psychiatric service these are likely to be people who have dementia with accompanying behavioral disturbance, or those with long-term functional mental illness and on-going management problems, often towards the end of their lives. (RCPsych, 2006b). Comorbid physical health problems may also be present, and contribute to the complexity of the individual's needs. Importantly, NHS Continuing Care funding places no restrictions on the settings in which the package of support can be offered or on the model of service delivery (DH, 2012b); in practice care is provided in a range of settings, including NHS long stay units and facilities operated by private providers (RCPsych, 2006a).

In April 2013, the Health and Social Care Act (2011) was fully implemented, with commissioning responsibilities moving from Primary Care Trusts to the newly formed Clinical Commissioning Groups (CCGs) and the NHS Board, and Strategic Health Authorities were abolished. CCGs are now the bodies legally responsible for both NHS continuing care eligibility decisions and the arrangement of services required to meet their needs (DH, 2012b), in accordance with the National Framework for Continuing Healthcare (DH, 2007). This framework includes a Decision Support Tool (DST), which standardizes the process for needs assessment and decision-making regarding eligibility for NHS Continuing Care funding, and also sets out guidelines for review of eligibility at both three months after initial assessment and a minimum of yearly intervals thereafter.

Service models of long-term psychiatric care for the elderly

Studies of service provision of long-term psychiatric care have tended to focus on working age adults rather than older people with mental illness (Hellman, Reference Hellman and Shore1988; Trieman and Leff, Reference Trieman and Leff1996; Reference Trieman and Leff2002a; Reference Trieman and Leff2002b; Thornicroft et al., Reference Thornicroft, Bebbington and Leff2005), and the majority of studies that have been conducted solely in older adults focus on service models of dementia care exclusively (Holmes et al., Reference Holmes1990; Carr and Marshall, Reference Carr and Marshall1993; Wimo et al., Reference Wimo, Mattson, Krakau, Eriksson, Nelvig and Karlsson1995; Rovner et al., Reference Rovner, Steele, Shmuely and Folstein1996; Green et al., Reference Green, Girling, Lough, Ng and Whitcher1997; Roberts et al., Reference Roberts2000; Brodaty et al., Reference Brodaty2003; Jonsson, Reference Jonsson2004; Macdonald and Cooper, Reference Macdonald and Cooper2007; Comas-Herrera et al., Reference Comas-Herrera2011). There is a lack of comparative evaluation of models of psychogeriatric care in terms of effectiveness and cost (Banerjee and Chan, Reference Banerjee and Chan2005). However, the body of research in this area has been increasing over the last two decades (Draper, Reference Draper2000) despite acknowledgment that research in this area is difficult methodologically (Mccrae and Banerjee, Reference Mccrae and Banerjee2010).

De-institutionalization within psychiatric services has been the focus of mental health policy in many geographical regions over the last quarter of a century including in the UK (Mangen, Reference Mangen1994; Monroe-Devita and Mohatt, Reference Monroe-Devita and Mohatt1999; Prince and McDaid, Reference Prince, McDaid, Knapp, McDaid, Mossialos and Thornicorft2007), and the effects of this have been well documented (Trieman and Leff, Reference Trieman and Leff1996; Reference Trieman and Leff2002a; Reference Trieman and Leff2002b; WHO, 2004; Prince and McDaid, Reference Prince, McDaid, Knapp, McDaid, Mossialos and Thornicorft2007). The Team for the Assessment of Psychiatric Services (TAPS) Project (Leff et al., Reference Leff, Trieman, Knapp and Hallam2000) conducted a series of observational studies of long stay patients moved during planned hospital closures according to national policy at the time. Movement into the community resulted in positive outcomes for patients in terms of social functioning, behavior, and quality of life (Trieman and Leff, Reference Trieman and Leff1996; Leff et al., Reference Leff, Trieman, Knapp and Hallam2000; Trieman and Leff, Reference Trieman and Leff2002a). All bar one of these studies included solely working age adults without dementia, although the mean age of some of these cohorts was in the early 60’s (Trieman and Leff, Reference Trieman and Leff1996) which may make some of this work more relevant to the older adult population.

TAPS Project 30 specifically explored outcomes (but not costs) of the psychogeriatric hospital population post discharge from long stay hospital wards (Trieman and Wills, Reference Trieman, Wills and Leff1997). Surveys of the psychogeriatric populations in two hospitals revealed that the majority of the 89 patients in one hospital had organic disorders, with most of these suffering from Alzheimer's dementia. Of the 214 long stay patients in the other hospital aged over 70 years, most were originally diagnosed as having functional illness (the majority of these had schizophrenia). Importantly, many of the functional patients were also found to have severe cognitive impairment, with a “mixed type of morbidity in which dementia had apparently superseded the original illness” (Trieman and Wills, Reference Trieman, Wills and Leff1997) later described by the authors as a “functional-mixed-organic continuum.”

The project went on to compare the quality of care for patients based in community facilities versus those remaining in long stay wards; overall quality of care was found to be higher in the community. One key recommendation was that when planning new facilities, attempts must be made to avoid a mixture of elderly functionally ill patients with patients suffering from dementia; for the reason that mixed compositions may “reduce the ‘graduates’ to the lowest common level of functioning” (Trieman and Wills, Reference Trieman, Wills and Leff1997) and the expectation that those with functional illness are more likely to have any deterioration in cognition and behavior reduced to a minimum in the right environment. These conclusions would seem highly relevant to any future developments of specialist continuing care services; however TAPS Project 30 was limited by two key factors. First, patients in the community facilities had already been discharged from long-term hospital wards; and this earlier discharge might suggest they were likely to have been considered less complex to start with (Leff et al., Reference Leff, Trieman, Knapp and Hallam2000). The study also did not use any standardized outcome measures for quality of care or quality of life.

International and European perspective

A report by the World Health Organization's Health Evidence Network (WHO, 2004) highlighted a lack of studies evaluating models of old age specific mental healthcare, and a need for further research. The authors stated that “while community residences for long term institutional care appear to offer better quality care than hospitals, it is unclear whether there are particular patients who require long term psychogeriatric hospitalisation”. (WHO, 2004). Whilst the WHO is unclear, others have stated clear opinions that some patients will always need long-term hospitalization due the severity and complexity of their illness (Macpherson et al., Reference Macpherson, Shepherd and Edwards2004).

Dementia Specialist care units (SCUs) are an example of a service model for long-term care particularly popular in the USA (Holmes et al., Reference Holmes1990). Evidence with regard to outcomes has been mixed (Roberts et al., Reference Roberts2000) and generally research on SCUs has been varied in quality, tending to be based on small studies using different outcome measures, with several sources of bias identified (Sloane et al., Reference Sloane, Lindeman, Phillips, Moritz and Koch1995). SCUs set up in Italy have reported reduced use of psychotropics and reduced behavioral disturbance at six months follow-up compared with hospital admission (Bellelli et al., Reference Bellelli1998). In a descriptive study of available services in Sweden, Annerstedt et al. (Reference Annerstedt, Sanada and Gustafson1996) called for broader research on the effects of differentiation in dementia care and argued that patients on long stay wards may become suitable for nursing home care due to deterioration in dementia and decreased mobility. One Australian randomized controlled study on specialized long-term care for dementia (Wells and Jorm, Reference Wells and Jorm1987) found evidence that relatives of residents in specialized care had improved psychological health as opposed to those admitted into non-specialized institutional care; and that costs of care were reduced mainly due to lower hospitalization rates, however this finding has not been reproduced by any other studies. A number of studies argue for the effectiveness of psychogeriatric outreach services to nursing homes (Draper et al., Reference Draper, Meares and McIntosh1998; Bartels et al., Reference Bartels, Moak and Dums2002; Fischer et al., Reference Fischer2011), particularly as nursing home environments have been found to have difficulty in meeting the needs of more complex patients (Martin et al., Reference Martin2002).

Cost effectiveness studies

The TAPS studies considered the move from long stay hospitals into the community to have been successful in terms of improved outcomes and reduced costs (Leff et al., Reference Leff, Trieman, Knapp and Hallam2000); but follow-up periods were limited. One study (Beecham et al., Reference Beecham2004) involved much longer follow up than the TAPS studies (12 years as opposed to 1–5 years) and looked at 75 former long stay patients and their outcomes. This study found that most people lived in staffed accommodation supported by community services, with mean care costs lower than long stay hospital costs. With regard to the long-term care of working age adults, Knapp et al. (Reference Knapp, Beecham, Hallam and Fenyo1993) argues that community-based services do not necessarily reduce costs, as often these are redistributed to other budgets and agencies. He agrees that quality of care, quality of life, and patient satisfaction are usually improved for patients in the community.

Few studies have looked specifically at both outcomes and costs of long-term care services for the elderly and mentally ill. One cohort study looked at the costs of “domus care” in South East London (Beecham et al., Reference Beecham, Cambridge, Hallam and Knapp1993). The “domus” model of care was viewed as being a community-based home as opposed to a long-term psychiatric unit (Dean et al., 1993). Costs of care in the community were found to be marginally greater than costs in the long stay ward. Unfortunately, this study was too small to link with any specific outcomes based data, but qualitative data (Dean et al., Reference Dean, Briggs and Lindesay1993) indicated improvements in quality of life for residents after moving. These studies looked at two “domuses” which were run by local authorities with some psychiatric service input; one unit housed residents with ongoing severe mental illness, and the other housed patients with dementia. Movement of patients from long stay wards into these domuses resulted in increased cognitive abilities for those with dementia (Dean et al., Reference Dean, Briggs and Lindesay1993) and other improvements for those with schizophrenia, including higher levels of global social functioning. Importantly, both these domuses were later regarded as specialist continuing care units, commissioned by local CCGs from a mental health trust, and have now both closed.

The effect of relocation on elderly patients

The studies discussed above did not report increased mortality rates amongst patients discharged from long stay units; however there is a body of evidence that shows that relocation can have negative impacts on the elderly (Castle, Reference Castle2001), including increased mortality rates on moving from institution to institution (Aldrich and Mendkoff, Reference Aldrich and Mendkoff1963; Killian, Reference Killian1970). Not all studies have found this to be the case (Danermark et al., Reference Danermark, Ekstrom and Bodin1996). Degree of physical frailty has been identified as a possible predictor of increased mortality (Killian, Reference Killian1970). This issue is likely to be highly relevant to any changes in long-term service provision for the continuing care population in the UK.