Provision of Specialist Continuing Care Services for Older Adults across the UK

Article key words: service evaluation, continuing care

Running title: Literature review and current service provision

Dr Josie Jenkinson (corresponding author)

Address: Department of Old Age Psychiatry, Box P070, Institute of Psychiatry,

Psychology and Neuroscience, King’s College London, De Crespigny Park, Denmark

Hill, London SE5 8AF

Email: josie.jenkinson@kcl.ac.uk

Tel: +44 (0) 20 7848 0508

Fax: +44 (0) 20 7848 0632

Professor Robert Howard

Address: Department of Old Age Psychiatry, Box P070, Institute of Psychiatry,

Psychology and Neuroscience, King’s College London, De Crespigny Park, Denmark

Hill, London SE5 8AF

Email: robert.j.howard@kcl.ac.uk

Tel: +44 (0) 20 7848 0508

Fax: +44 (0) 20 7848 0632

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Abstract

Background

Older people with mental health problems who meet needs based criteria for

National Health Service continuing care funding may be cared for in a variety of

settings. These services have evolved due to socioeconomic and political pressure,

with the extent of movement of care from traditional NHS run long stay units into

the private sector being unclear. Little attention has been paid to the best model of

service provision for this group in terms of quality of care, patient outcomes and cost

effectiveness.

Methods

A literature review was conducted in order to explore what is known about service

models for long-term psychiatric care for older people and their cost effectiveness.

Following this review, an online survey was conducted in order to establish current

specialist continuing care service provision by provider organisations, as well as any

planned developments in services.

Results

The way specialist mental health continuing care services are provided in the UK

varies, with just 45% (33) of NHS providers still operating their own services.

Specialist mental health continuing care is an area of current service review for a

number of organisations.

Conclusions

Specialist care services for older adults with mental health problems in the UK are

changing, but there is a lack of research on models of service delivery for this group

of vulnerable individuals with complex needs. In the context of financial pressures

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within the NHS, and an increasing awareness of the need to develop and improve

quality of services both for those with dementia and other mental illnesses, an

urgent need for further research in this area is identified.

Introduction

Specialist continuing care services for older adults are an example of long-term care

provision, one of the key elements of old age psychiatric services nationally

(Banerjee and Chan, 2005). Service models for the long term care of the elderly

mentally ill are varied and operate in a mixed economy of health care, with varying

degrees of involvement of the private and third sectors and overlap with social

services arrangements (Banerjee and Chan, 2005 ; Challis, 2002 ; Ryan, 2005). Older

people under the care of long-term old age psychiatric services are a heterogeneous

group; including people with dementia, late onset mental illness, so-called

‘graduates’ with long-term mental illness as well as those who suffer from both

dementia and other mental illness (Banerjee and Chan, 2005 ; Jolley, 2004 ; Mann,

1976). In addition, older adults are more likely to have physical health problems,

increasing the complexity of their presentation and management (Banerjee and

Chan, 2005). Most will have their care funded by National Health Service continuing

care arrangements due to their high level of need (DH, 2007; 2012a). Bearing in mind

the global trend towards deinstitutionalisation of psychiatric care, it could be argued

that the provision of long term care services for the elderly by mental health trusts is

one area in which considerable quality improvements and cost efficiency savings

could be made. This is particularly topical in the context of current financial

pressures on the UK NHS, as long-term care services account for a large proportion

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of spending within mental health services for older adults. This paper explores what

is currently known about service models for the delivery of long term psychiatric

care in older adults and their cost effectiveness, and also presents the results of a

survey into the current provision of long term specialist care services by NHS

organisations in the UK. A literature review was conducted by means of an online

search of Pubmed, Medline, Cinahl, Psycinfo, and NHS Evidence databases. Search

terms used were as follows: continuing care service models mental health,

continuing care psychiatry, continuing care psychogeriatrics, costs of continuing

care, costs of long term care, discharge from long term care, and relocation of the

elderly.

NHS Continuing Care

In the United Kingdom (UK), continuing care funding is provided by the National

Health Service (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, 2005). Within an old age psychiatric service these are likely to be people

who have dementia with accompanying behavioural 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

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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 standardises 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 3 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, 1988 ;

Thornicroft, 2005 ; Trieman, 1996; 2002a; b), and the majority of studies that have

been conducted solely in older adults focus on service models of dementia care

exclusively

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(Brodaty, 2003 ; Carr, 1993 ; Comas-Herrera et al., 2011 ; Green et al., 1997 ; Holmes

et al., 1990 ; Jonsson, 2004 ; Macdonald and Cooper, 2007 ; Roberts et al., 2000 ;

Rovner et al., 1996 ; Wimo, 1995). There is a lack of comparative evaluation of

models of psychogeriatric care in terms of effectiveness and cost (Banerjee and

Chan, 2005). However the body of research in this area has been increasing over the

last two decades (Draper, 2000) despite acknowledgment that research in this area

is difficult methodologically (Mccrae, 2010).

De-institutionalisation 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, 1994 ; Monroe-Devita, 1999 ; Prince, 2007), and the

effects of this have been well documented (Prince, 2007 ; Trieman, 1996; 2002a; b ;

Who, 2004). The Team for the Assessment of Psychiatric Services (TAPS) Project

(Leff, 2000) 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, behaviour and quality of life (Leff, 2000 ; Trieman, 1996; 2002a). 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, 1996) 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, 1997).

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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, 1997) 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, 1997) and the expectation that those with functional illness

are more likely to have any deterioration in cognition and behaviour 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. Firstly, 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

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start with (Leff, 2000). The study also did not use any standardised outcome

measures for quality of care or quality of life.

International and European perspective

A report by the World Health Organisation’s Health Evidence Network (Who, 2004)

highlighted a lack of studies evaluating models of old age specific mental health care,

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 hospitalisation

due the severity and complexity of their illness (Macpherson, 2004).

Dementia Specialist care units (SCUs) are an example of a service model for long

term care particularly popular in the USA (Holmes et al., 1990). Evidence with regard

to outcomes has been mixed (Roberts et al., 2000) 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, 1995). SCUs set

up in Italy have reported reduced use of psychotropics and reduced behavioural

disturbance at six months follow-up compared with hospital admission (Bellelli,

1998). In a descriptive study of available services in Sweden, Annerstedt (1996)

called for broader research on the effects of differentiation in dementia care and

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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,

1987) found evidence that relatives of residents in specialised care had improved

psychological health as opposed to those admitted into non specialised institutional

care; and that costs of care were reduced mainly due to lower hospitalisation 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 (Bartels, 2002 ; Draper, 1998 ; Fischer, 2011), particularly as nursing home

environments have been found to have difficulty in meeting the needs of more

complex patients (Martin et al., 2002).

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,

2000); but follow up periods were limited. One study (Beecham, 2004) 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 (1993) argues that community based services do

not necessarily reduce costs, as often these are redistributed to other budgets and

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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, 1993). The ‘domus’ model of care was

viewed as being a community based home as opposed to a long-term psychiatric unit

(Dean, 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, 1993) 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, 1993) 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 care

commissioning groups (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

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shows that relocation can have negative impacts on the elderly (Castle, 2001),

including increased mortality rates on moving from institution to institution (Aldrich,

1963 ; Killian, 1970). Not all studies have found this to be the case (Danermark,

1996). Degree of physical frailty has been identified as a possible predictor of

increased mortality (Killian, 1970). This issue is likely to be highly relevant to any

changes in long term service provision for the continuing care population in the UK.

Summary

There is some evidence that community based care for long term psychogeriatric

patients is more cost effective than long stay wards, however this is limited in terms

of being specific either to the deinstitutionalisation movement or purely dementia

care. The literature tends to separate service models into dementia care and other

long term psychogeriatric services and this could be seen to reflect an underlying

view that there is a need for different models of service provision for people with

dementia and those with other mental illness, whether it is late onset or

longstanding in nature. What is unclear is which services are most appropriate for

those people who have both ongoing mental illness and dementia; and whether or

not this group could be effectively cared for in a dementia care setting that is

equipped to deal with severe behaviour disturbance. Further work is required to add

to the body of evidence available on both the costs and outcomes of discharging a

very specific and vulnerable group of patients, as well as exploring which factors may

predict positive outcomes.

Background to survey

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Specialist continuing care services are under review at the South London and

Maudsley NHS Foundation Trust (SLaM), as an area for improvement of quality of

care and patient outcomes. At the time of writing, SLaM provided approximately 60

specialist continuing care beds in 3 standalone specialist care units across 3 inner

London boroughs for older adults. In order to gain a national perspective, we sought

to explore to what extent NHS mental health service providers in the UK are still

providing their own specialist continuing care services for older adults. Of particular

interest is whether or not organisations are planning to reduce or expand existing

services, or to develop new services in the light of recent changes in UK health

services commissioning and the pressure to make efficiency savings.

Key survey questions

What proportion of NHS mental health service providers in the UK still

provide specialist continuing care services for older adults?

How are these services provided?

Are NHS organisations planning to reduce or expand these services?

Methods

Using the Royal College of Psychiatrists membership database, all consultant old age

psychiatrists in the UK were contacted with a link to an electronic survey. Survey

questions regarding specialist continuing care services were included amongst other

questions regarding older adults’ mental health services being asked as part of a wider

review of service provision. Respondents were asked which organisation they worked

for, whether or not their organisation ran its own specialist care service; and if not,

how this service was provided (e.g. by third or private sector). They were also asked if

12

their employing organisations had any plans to develop such services. Options were

given as well as free text comments box for each question. A reminder email was sent

after 4 weeks, and a deadline of 8 weeks was set for completion of the survey.

Respondents were asked to provide contact details in order to clarify information in

cases where unclear or conflicting responses had been given.

Results

As per Figure 1 below, 415 responses were received from a sampling frame of 1126

consultant old age psychiatrists (37%). 81 (20%) of the 415 surveyed said that they

worked in continuing care services either wholly or partially; with 163 (68.5%)

reporting that they thought that these services were necessary.

Figure 1 inserts here

NHS mental health services for older people in the UK are provided by 80 different

organisations (56 Mental Health Trusts in England, 12 Health Boards in Scotland, 7

University Health Boards in Wales and 5 Health and Social Care Trusts in Northern

Ireland). 91% (73) of these organisations were represented by the 415 survey

responses received. As the organisations were not represented proportionately (i.e.

some organisations had more responders than others) the data were analysed

having filtered the responses by organisation. Of the organisations represented, 33

(45%) provided specialist continuing care services and 40 (55%) did not. Further

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detail on these services and plans to expand or reduce them is given in Table 1

below.

Table 1 inserts here

Of the 33 NHS organisations that did provide specialist continuing care services, 12

also had patients being cared for in the private or third sector in addition to the

service provided by the mental health trust/health board/university health board. Of

the 33 that did provide services, 13 were reported to be planning to stop (4) or

reduce (9) existing services. Just 2 were planning to expand their services.

In the 40 organisations that did not provide any specialist continuing care services,

placements were provided either in private care homes (35) third sector care homes

(5), as well as some spot purchasing of beds in the private sector or within other NHS

organisations (5). Just four of these organisations (10%) had reported plans to start a

specialist care service.

The majority of organisations that did not run their own specialist care services

placed patients within the private sector, although a small number referred to the

third sector, or out of area specially commissioned placements. Many of the free text

comments provided referred to this causing additional pressure on acute inpatient

services due to difficulties with delayed discharges. Several organisations reported

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having access to ‘Challenging Behaviour Units’ for people with dementia, which do

not appear to be funded by continuing care funding but provide more of a

rehabilitation type model before discharge into a community placement. Others

referred to running in-reach services for private or local authority nursing homes to

provide additional support for people with complex care needs.

Limitations

Not all organisations providing mental health services were represented in this

survey, however the majority were. Response bias is possible in that consultants may

have been more likely to give additional information on services if they thought they

were sub standard or excellent. Information gathered was dependent on consultants

having accurate knowledge of existing service models and planned changes within

their organisations. Data was triangulated by direct contact with trusts in some cases

where responses were contradictory or unclear, however this was not done in all

cases. A question asking whether services are being redesigned would have been

helpful as several respondents reported that services were going to both expand and

reduce; this could refer to areas in which a service is being redesigned, as is the case

with South London and Maudsley NHS Foundation Trust.

Discussion

Survey results confirm that there is variation in how specialist continuing care

services are provided in the UK, with no set model of service delivery, and that most

15

(55%) of NHS mental health service providers do not provide any of their own

specialist continuing care services for older adults.

Whereas previously individuals may have stayed on long stay units for many years,

regular review of needs and eligibility for funding using the DST is likely to encourage

discharge into non specialist community placements e.g. nursing homes. This is due

to both pharmacological and non-pharmacological treatments, as well as the likely

change in presentation and reduction in behavioural disturbances secondary to the

inevitable deterioration in those individuals with dementia. As a result of this the

complexity of needs of patients within specialist care services are likely to increase,

as those who no longer meet needs based criteria are discharged. This will impact on

necessary staffing levels and expertise within existing services.

Over recent years there has been an increasing focus on quality within healthcare as

well as the culture of care (Francis, 2013) and a number of scandals in long-term care

institutions have led to a particular focus on care homes and elderly dementia care.

Changes in commissioning of services following the 2011 Health and Social Care Act

and an expansion of the role of the Care Quality Commission (CQC) are likely to lead

to more scrutiny of current provision of services, and may require complex

commissioning arrangements due to relatively small numbers of people requiring

specialist long term continuing care services. It is possible that NHS organisations will

be deterred from running long stay units due to the costs and quality of care issues

16

inherent in these services, particularly for relatively small numbers of individuals

who are now going to meet eligibility criteria in the long term.

Evaluating the effectiveness of service models in old age psychiatry is complex and

frequently not undertaken (Banerjee, 2012). In the absence of clear evidence as to

the best model for providing specialist continuing care services, cost pressures rather

than quality of care may well be the predominant driver in the further evolution on

these services. Interestingly, a Canadian systematic review on continuing care

services for dementia sufferers found that there was benefit to receiving care in

specialist units compared with non-specialised institutional care, and that costs of

care were reduced mainly due to lower hospitalisation rates (Roberts et al., 2000).

Two of the organisations reporting that specialist continuing care services were

being developed referred to this as a business opportunity, to avoid having to make

spot purchases of placements, and to make money from other organisations

purchasing continuing care placements from them.

The British Geriatrics Society issued guidance advising that geriatric medicine and old

age psychiatry should be ‘re-engaged in a structured manner within the care home

population’ and that no individual should enter institutional care without having had

access to an effective multidisciplinary and specialist assessment system with

appropriate treatment and rehabilitation (Bgs, 2004). One possible model for

patients with dementia who are eligible for NHS continuing care is a rehabilitation

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model with additional community support services to allow people to exit long-term

care units. Specialised challenging behaviour units for patients with dementia which

focus on trying to transition patients back into the community rather than keeping

them on inpatient units are already established in some areas; care home support

teams to provide specialist input for patients with mental health needs in

community placements are also under development in some organisations.

Increasing attention has been focussed on dementia care, including continuing care

provision for those with dementia, but less on the long term care of the elderly with

long term functional illness, an issue highlighted by Green et al. (1997). Patients who

have been detained under Section 3 of the Mental Health Act are eligible for Section

117 aftercare – also funded by the NHS. It may be that for some patients who do not

meet continuing care eligibility criteria this can be used as an alternative. There is a

paucity of information available on the characteristics of patients who currently

receive specialist continuing care funding for mental health reasons.

In summary, the results of the survey indicate that where NHS run specialist care

services still exist, they are more likely to be being cut than developed from scratch

and this is an area of service review for many organisations. What is not yet clear is

how these services are to be replaced and the effect of current patients on these

changes to service delivery. There is evidence to suggest that discharging long stay

patients leads to negative outcomes (Mccrae, 2011). This raises important questions

as to how best to manage these changes for this very vulnerable group of patients

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with varying and complex needs, as well as highlighting the fact that the type of care

that is available will vary depending on region within the UK. The effect of closing or

developing services on both quality of care and cost measures needs to be assessed

where possible, particularly as there is a lack of research in this area and no known

best model of service delivery. More research is needed on both the characteristics

of patients within old age psychiatric services who meet criteria for NHS continuing

care funding and the effectiveness of different models of service delivery.

Conflict of Interest

None

Description of Authors’ Roles

Dr Josie Jenkinson: Conducted survey and literature review.

Professor Robert Howard: Advised on literature review methods, presentation of

results and subsequent discussion.

Acknowledgments

Dr James Warner, Chair of Faculty of Old Age Psychiatry, Royal College of

Psychiatrists.

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Figure 1 Flowchart illustrating survey responses

Table 1: Break down of specialist continuing care service provision

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Total Patients being

cared for in

private care

homes or third

sector

Plans to

stop or

reduce

services

Plans to start

a specialist

continuing

care service

Planning

to expand

services

Specialist

continuing care

services provided

by organisation

33 12 13 n/a 2

Specialist

continuing care

services not

provided by

organisation

40 40 n/a 4 n/a

25