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Chapter Five Unmet Need

5.1 Unmet need is a difficult issue to address, mainly because there are different ways in which this concept can be interpreted and there is no consensus that one interpretation is superior to all others. In this chapter, we approach issues of unmet need from several viewpoints. First, we consider dimensions of unmet need highlighted by Bradshaw (1972). Second, we examine how available statistical data on Attendance Allowance and from the FRS Disability Extension and the Scottish Household Survey can be used to examine unmet need. Thirdly, we draw on qualitative evidence from the literature, considering how inequities and inadequacies in services may affect unmet need. Finally, we look at evidence from our survey of Scottish local authorities, highlighting some of their particular difficulties in identifying unmet need.

Categories of need

5.2 One way of thinking about unmet need is to reflect on Bradshaw's (1972) three categories of need:

a) normative need: what the expert or professional defines as need, based on some "desirable" standard;

b) felt need: what people want, expressed need, which may be translated into action i.e. demand;

c) comparative need: a measure of need found by comparing people in receipt of a service with those with similar characteristics who are not in receipt of the service.

5.3 Normative need is usually defined in relation to survey or research evidence. Experts may argue that measures such as self-assessed health or presence of long-term limiting illness can adequately measure normative need. However, we have already seen that in Scotland, survey evidence is limited and some of the common measures, such as self-assessed health or long-term limiting illness, are much too broad to be of value in assessing the demand for care services. The more precise assessment tools used in allocating individuals to particular forms of care are often too expensive to include in large-scale population surveys. There is a dearth of intermediate forms of analysis where professional medical diagnosis is included in a general social survey. The Scottish Health Survey does use such methods, but the sample frame only includes those aged up to 74 which is inappropriate for profiling care needs among older people. There is also a considerable delay in the availability of these data which reduces their efficacy: the 2003 survey was only published in December 2005.

5.4 Felt need is widely used in studies of older people. For example focus groups and older people's organisations frequently canvas felt need. Such indicators may be limited or inflated by people's perceptions and expectations and for this reason may be difficult to convert into reliable signals about likely demand to the suppliers of care. However, they are an important dimension contributing to the overall debate, and we discuss them in a later section.

5.5 One of the motives for creating the SSA- IoRN tool was to assess comparative need. As an indicator of relative need, part of its purpose was to support equitable treatment of those in different circumstances (locations, incomes etc.) who experienced similar levels of relative need. While this is a useful technique to ensure equity, it is not of great value in helping understand the absolute level of resource that might be required to meet the current profile of need.

5.6 One further issue that is often confounded with need is quality of service provision. Clearly the same service can be delivered at different levels of quality. But what is the level of quality that is needed? The most obvious approach to this issue is to impose standards. In Scotland, National Care Standards were developed by the Scottish Executive, as we noted in Chapter 2. They were most recently amended in March 2005. The Care Commission which was set up in 2001 under the Regulation of Care (Scotland) Act 2001, registers and inspects all services regulated under the Act, taking account of the National Care Standards. Thus, the National Care Standards set an externally determined acceptable quality of provision, which is enforceable through the Care Commission. The equivalent body in England is the Commission for Social Care Inspection. Though it has only existed since 2004, it is expected to take a leading role in encouraging quality improvements in social care provision in the private, public and voluntary sectors. Nevertheless, the imposition of care standards in both Scotland and England does give a useful metric against which to calibrate unmet need. Simply receiving personal care may not mean that needs are met - exploring the extent to which care meets standards can help to improve understanding.

5.7 The Scottish Parliament's research note on unmet need (Scottish Executive 2001b) highlights the CDG recommendation that:

"We recommend that monitoring arrangements are quickly agreed and established, covering provision by all sectors. This should include establishing clearly what levels and volume of services are provided by care providers at the moment and monitoring how that changes after the introduction of the new policy next April, in terms of meeting unmet need and any shift from informal care." (Care Development Group 2001, p22)

It is not clear whether and how this recommendation has been taken forward. One of the main difficulties in coming to any national assessment of unmet need is ensuring consistency across local authorities. A precondition for such consistency is a common approach to information collection. The 'Local and National Information Requirements for Social Work in Scotland: Joint Statement' (Social Work Information Review Group 2000) suggested that councils would be developing a common approach to information collection. This information was to include prevalence rates of dementia, physical disability etc by age group, severity and estimated type and volume of service needs. Such data would have been useful indicators of the extent of unmet need but as yet do not appear to be available.

5.8 Another approach to determining unmet need would be to investigate cases of rationing - where services are controlled by queuing rather than being readily available. Age Concern Scotland (2003) argued that delays in assessments were being used to ration the provision of free personal care.

5.9 The Scottish Parliament is currently holding an inquiry into the Community Care and Health (Scotland) Act 2002 and the Regulation of Care (Scotland) Act 2001. Responses to the completed initial consultation phase of this inquiry came from many bodies that have a direct interest in providing care. While many complained that the area was under-resourced, the issue of unmet need was not raised explicitly at the onset of the enquiry.

5.10 However, in some cases there may be a need which is not met by local authorities because the consumer does not consider the type of care being offered to be acceptable. This could occur because individuals view the quality of care provided by local authorities as inferior and so do not seek assistance from local authorities at all. There are probably a group of affluent older people who make this choice. Their numbers are likely to be small, given that Scotland has a relatively small number of affluent pensioners. This is unmet need in the sense that there is disjunction between the care that local authorities are prepared to supply and the form of care that clients demand. However, there is no unmet need for society as a whole, so long as the private market is able to provide the necessary care. This is distinct from unmet need where there is no provision outside local authorities at a price that clients can afford. For example, members of black and minority ethnic groups, who feel that available services cannot meet their particular cultural needs, may be unable to purchase such care privately. Another form of unmet need is associated with those who lack knowledge of services either because they have been unable to gather the relevant information directly or through contact with care professionals.

Attendance Allowance

5.11 One other approach to unmet need is to use information on the incidence of Attendance Allowance. Attendance Allowance is defined as "a tax-free benefit for people aged 65 or over who have an illness or disability and need help with personal care" (direct.gov.uk 2005). It has a completely different assessment structure from that relating to local authority care provision. Individuals claiming Attendance Allowance may be asked to attend a medical examination. Those involved in the assessment for DWP are:

• Medical Services - who organise medical examinations on behalf of DWP
• the 'decision-maker' - a non-medical person within DWP who is responsible for making a decision on benefit claims
• the Examining Medical Practitioner ( EMP) - the doctor who carries out the medical examination

These assessments are quite independent of local authorities though medical practitioners and social work staff may cross-refer potential clients either to DWP or to local authority social care. The extent of this cross-referral will depend on how closely relevant health and social care departments work together.

5.12 The take-up of Attendance Allowance provides an independent benchmark for needs associated with personal care. Not all those who receive Attendance Allowance will need the type of care that local authorities supply. Others will receive care from informal sources and can use the benefit to purchase goods other than care. Others will use the benefit to purchase personal care privately. For all of these reasons, one would not expect a direct match between the provision of Attendance Allowance and the provision of personal care by local authorities.

5.13 On the other hand, one would expect a positive correlation between the numbers receiving Attendance Allowance and the number receiving social care. The values are shown on a scatter diagram in Figure 5.1 along with a regression line that also shows a close positive relationship between the numbers receiving AA and those receiving personal care.

Figure 5.1 Numbers receiving Attendance Allowance and personal care by Local Authority 2003

Notes to Figure
Source: DWP Statistics, Scottish Executive, Free Personal Care Dataset

5.14 However, the numbers receiving personal care are significantly fewer than those being provided with AA, possibly for the reasons described above. And though there is a close correlation between the numbers receiving personal care and those receiving AA by local authority, it is not exact. This means that there are some local authorities who have more personal care clients than their number of AA claimants would suggest. Thus, for example, in 2004 in Glasgow there were 4.4 AA claimants for each individual receiving local authority personal care, in Edinburgh 5.4, in Aberdeen 3.3, in Dundee 7.1 and in Fife 2.7. It is difficult to explain such marked differences in the ratio between local authorities and particularly the contrast between two adjacent areas such as Dundee and Fife. A potential relevant factor may be the effectiveness of local authorities in maximising clients' incomes. As personal care is not means tested, there may be fewer financial assessments and therefore reduced opportunities to discuss and promote income maximisation.

5.15 Suppose that some local authorities are very effective in identifying personal care clients. One could conduct a thought experiment by calculating how many additional clients would be generated if all local authorities had the same ratio of clients to AA claimants as a local authority with a relatively low ratio. An obvious candidate is Fife, which is a reasonably representative large authority which also has a low AA to client ratio.

5.16 Assume that all other authorities also had 2.7 AA claimants for each personal care client seen by social services and that all such clients claim AA. Then there would be an additional 15,700 home care clients. If average personal care costs remain at around £3,000 per annum, providing for such a large group of individuals would cost an additional £47m. This assumes that these additional AA claimants are not already receiving personal care.

Table 5.1 Free personal care and Attendance Allowance

Notes to Table
Sources: Scottish Executive, DWP

5.17 Perhaps the provision of free personal care has increased claims for AA. This might occur if increased contacts between social work departments and home care clients resulted in an increase in applications for AA. There is no evidence that this is the case. Table 5.1 shows the number of home care clients receiving free personal care in Scotland, numbers receiving AA in both the UK and Scotland, the ratio of AA claimants in Scotland to those in the UK as a whole and the ratio of personal care clients to the number of AA clients in Scotland from 2002 to 2005. It suggests:

• There was no change in Scotland's share of UKAA claimants between 2002 and 2005. Although there was an increase in claimants throughout the UK, there was no additional increase in AA claims in Scotland that might have been associated with free personal care.
• The share of AA claimants in Scotland that receive free personal care rose from 18 per cent to 26 per cent between 2002 and 2005. However, this share has been fairly stable at around 25 per cent of AA claimants during 2004 and 2005. This slowing down does not suggest that AA claimants constitute a large pool of unmet demand.

5.18 This discussion of AA describes some very rough thought experiments: there is no direct evidence that the difference between the ratio of local authority clients to AA claimants by local authorities is a direct measure of unmet need. However, until the deviation between local authorities can be explained, there will always be a concern that there is some unmet need in areas which have relatively high ratios of AA claimants to those receiving FPC. Thus, we would argue that it is important to understand why not all of those receiving AA seek out help from their local authority, why the number of AA claimants in Scotland has stabilised relative to the rest of the UK, and what bearing such findings may have on the future costs of care.

Unmet need from survey data

5.19 The survey evidence on unmet need is of limited value due to small sample sizes. Unless a survey has a specific focus on unmet need, it is likely that the sample of those claiming that their needs are not being met is quite small. In this section, we attempt to calibrate unmet need using two surveys - the 1996/97 FRS Disability Extension and the Scottish Household Survey.

5.20 The 1996/97 FRS Disability Extension does have the specific intention of gathering information on unmet need among older disabled people. This survey was used by Stearns and Butterworth (2001) to help inform the CDG about levels of unmet need in Scotland. Their conclusion was that

"Levels of reported unmet need (current or during prior periods) for personal care do not exceed 10 per cent. Affordability is not reported as the most common cause of unmet need. Instead, not knowing what help was available, not knowing where to find help, or wanting to help one's self were reported more often" Stearns and Butterworth (2001 p156)

5.21 Table 5.2 attempts to reproduce the findings in Stearns and Butterworth (2001) Table 4. 13, using the FRS Disability Survey. In this survey, the sample size of disabled people in Scotland is very small and within that group the number who identify themselves as having unmet need are smaller still - only 20 respondents in Scotland actually had unmet need. Our estimate of a 5.8 per cent rate of unmet need is quite close to the 7 per cent of Stearns and Butterworth. Differences emerge because of slightly different ways in which the sample is drawn from the underlying dataset. But it is difficult to have any confidence in an estimate based on only 20 positive responses.

5.22 Cuthbert and Cuthbert (2005) do not contest the Stearns and Butterworth estimate of prevalence of unmet need, but argue that it should have been applied to their much larger estimate of 350,000 of the number of disabled people requiring care. Using an estimated cost per client of providing personal care of £3,300, they estimate the cost of unmet need to be £115m. This estimate is contingent on a much higher overall demand for personal care than has been established in other studies or is suggested by the evidence on AA.

Table 5.2 Unmet need from the FRS Disability Survey 96/97

Notes to Table
After Stearns and Butterworth (2001), Table 4. 13
Note - only 20 people actually had unmet need

Table 5.3 Unmet need from the Scottish Household Survey

5.23 Table 5.3 provides estimates of unmet need based on the Scottish Household Survey. These use the 2001/02 dataset and are based on a calculation of the difference between the number requiring care and those receiving care by gender and by age group. Again, very small numbers are involved - a total of 35 individuals with unmet need. The estimated proportions are much lower than those produced by Stearns and Butterworth.

5.24 Another approach to unmet need is followed in the Scottish House Condition Survey ( SHCS). Its asks the following questions about the services needed by any disabled persons in the household:

5.25 The Scottish House Condition Survey ( SHCS) offers some perspectives on unmet need. The SHCS is a housing-based survey of 20,000 households in Scotland. Among the 18,500 usable responses, 6,700 (36%) households had at least one physically disabled person in the household. We know from the 2001 Census that approximately 80 per cent of these will be aged 65 and over. The most disabled person in the house was asked a number of questions relating to his/her disability. Figure 5.2 shows that the majority of these individuals did not have difficulty with tasks relating to mobility, cooking and toileting. The most common functional problem was getting up and down stairs, which affected almost half of the disabled people in the sample. Only a small proportion of the disabled were completely unable to perform the tasks, and again, getting up and down stairs was the most common task (3%) that could not be performed at all.

5.26 Disabled people receive various forms of service, the most common being help with housework (5.4%). But a very substantial proportion (44.4%), believe that having additional home help would improve their quality of life (Table 5.4). This is by far the most common form of latent demand amongst disabled people. There are also significant numbers who believe that additional occupational therapy/physiotherapy or help with shopping would enhance their quality of life. It is difficult to know whether a professional assessment would result in a similar ranking of services that would improve quality of life. It is also impossible to ascertain how far these desires for extra services are backed by ability and willingness to pay. Nevertheless, these data do give some indications of the types of service that disabled people themselves believe would enhance their quality of life.

Figure 5.2 Difficulties experienced by disabled people in households responding to the Scottish House Condition Survey ( SHCS)

Table 5.4 Disabled people's beliefs about services that would improve quality of life

Notes to Table
Source: Scottish House Condition Survey

5.27 The SHCS also contains data on unmet need for physical housing aids and adaptations for disabled people. Table 5.5 compares the shares of disabled people who have particular adaptations and those that claim that they need this adaptation. The final column in the table expresses those who claim to need adaptations as a share of the total that either have, or claim a need, for adaptations. Not surprisingly, given that getting up and down stairs is the most common form of functional disability, the highest rate of unmet need (52%) is for stair lifts. There are also significant numbers of disabled people who would like to have their kitchen altered, extensions added, ramps built, doors widened or power/lighting points moved.

Table 5.5 Unmet need for physical housing aids and adaptations for disabled people

5.28 These comprise a very large set of stated needs that are not currently being met. Clearly the resource cost associated with such adaptations, if scaled up to the entire population of disabled people, would be very large. Again, this illustrates the difficulty of establishing what is meant by unmet need, since an external arbitrator might well argue for a different configuration (perhaps smaller) of provision. To argue that unmet need can be equated to all expressed consumer demand is not realistic, since this is likely to substantially exceed capacity to supply.

Other research on unmet need

5.29 Unmet need is difficult to research, and there is little research specifically focused on it. In general, the literature suggests that researchers identify unmet need when they are researching other topics, such as access to services or experiences of service use. Much of the evidence base about unmet need is therefore indirect. In common with the other areas of research we have considered, it is rare for researchers to single out personal care for separate consideration. It is unlikely however that the unmet needs identified do not include personal care.

5.30 Unmet need is sometimes considered through the use of proxies. For example, Purandare et al.'s (2004) postal survey of 1,689 UK care home managers asked them about the needs of their residents for services to meet their mental health needs. The results suggested very significant shortfalls in services, especially in terms of the availability of geriatricians. The authors express considerable caution about these findings, as they were not considered in relation to actual provision of services, and factors such as staffing levels in the care homes which might have affected managers' perceptions were not considered. A similar approach to assessing unmet need for personal care would be subject to the same limitations.

5.31 Unmet need may also be identified where it can be demonstrated that people are not asking for services. This may be for various reasons including lack of knowledge, or a feeling that services cannot meet their needs, wishes or requirements. There is a substantial body of research on older people from BME groups. Recent work (Butt and O'Neil 2004) has identified a degree of "research fatigue" as studies repeatedly demonstrate lack of access to appropriate services, lack of knowledge about services, and lack of cultural competence in services, but little change seems to follow. A further example is Baldock and Hadlow's (2002) study of housebound older people in England, which identified a tendency to have a negative view of services, and to feel that they would not be helpful. They argue that intervention is needed to ensure that some very vulnerable older people get help they need.

5.32 A number of particular groups, including BME groups, have been identified as having unmet need. Evidence of this is their tendency not to take up services, and of their experience of services that are not culturally appropriate, or operate in other exclusionary ways. For example, in Scotland, Foong, Walsh and Goh (2000) suggest that older Chinese people may need specialist services to meet their mental health care needs, due to limitations in the ability of practitioners to respond to their specific needs. They note communication difficulties, the tendency to consult doctors with physical problems rather than mental health issues, a focus on medicine rather than therapy and the use of Traditional Chinese Medicine in tandem with Western medicine as examples of specific issues for this group. Fitzpatrick, Mold and Roberts' (2005) literature review about BME older people in care homes found that they were not receiving the most appropriate care, and that their independence was compromised. Their cultural needs were not addressed effectively. Tester et al.'s (2004) recent study of care home residents in Scotland also identified potential disadvantages deriving from minority ethnicity such as care homes which did not cater for their cultural preferences, where food was, for them, unappetising and where there were communication difficulties. However, where a care home specifically addressed minority cultural preferences, these were much appreciated.

5.33 Other particular groups identified as having unmet need include, for example, informal carers, whose needs for support we have already discussed as presenting some complex issues. Additionally, Ahmed et al.'s systematic review (2004) finds that access to palliative care is often difficult for older people; Knott (2003) identifies confusion in the provision of footcare, an important aspect of personal care; Percival (2003) identifies deficiencies in services for blind people.

5.34 Some literature identifies unmet need by looking at demand for services and potential increases in demand. Examples include work on intermediate care in England (Barker 2004), a shortage of supply of sheltered housing (MacLaren and Hakim 2003), a shortage of hospice places (Mulholland 2002) and so on. Whether such material really does indicate unmet need is a matter of some debate, as it raises questions about expectations and standards, as well as equity of access.

Equity of service provision

5.35 Inequities in service provision may imply unmet need. For BME groups for example, the inequalities which many authors have identified in terms of service provision and service use add to the picture of lack of access noted above, and can provide a more subtle appreciation of its consequences. Relevant research includes Nazroo et al. (2004) and Butt and Moriarty (2004), who both emphasise that, whilst BME groups generally experience difficulties in this area, it is also important to explore differences within BME groups. In this, they support Blakemore's (2000) argument that BME groups vary internally in their potentiality to support older people. It is important to note that evidence in this area comes not only from the experiences of individuals, but also from the experiences of the minority ethnic voluntary sector, a significant provider of services for BME groups in Scotland, which perceives itself as lacking in resources, and experiences pressure of demand which is identified as unmet need (Bowes and Dar 2000, Bowes, Sim and Srivastava 2001). Some of this is need for personal care, including assisted bathing, and the same research has demonstrated that personal care is a particularly culturally sensitive area of provision, linked as it is with gender-based taboos about who can provide such care.

5.36 Some disadvantages experienced by BME groups derive not so much from ethnicity as from poverty, and are shared with other categories of the population. For example, Allen's study in Bradford (2005) identifies low income home owners (of whom there are many in the Scottish BME population) as being particularly unlikely to be receiving the services they need. Similarly, Beattie et al (2005) and Bowes and Wilkinson's Scottish study (2003) identify that people with dementia in general and BME people with dementia experience problems of access to appropriate services. And Abbott and Sapsford's (2005) work in Middlesbrough highlights the particular difficulties faced by older people living in deprived communities, which Scottish BME groups are disproportionately likely to do. Breeze et al.'s (2001) study (analyzing data from 8,000 people) demonstrated that socio-economic disadvantage persists into later life. These studies imply that even though in principle, poverty should obviate most charges for care and support and even though personal care is now free for everyone, there may still be exclusionary processes in operation producing unmet need.

5.37 Linked with issues of poverty are issues of benefits. We have already discussed some issues attached to AA which may in itself offer means of identifying unmet need for free personal care. Other issues concerning benefits are also relevant. Barnard and Pettigrew's (2003) study for the Department of Work and Pensions explored barriers to claiming benefits among BME groups and found that these included lack of resources (especially knowledge of the system), negative attitudes to claiming involving expectations that claims would be unsuccessful, lack of support for the process of claiming, difficulties such as lack of ID evidence or NI numbers (especially for South Asian women) and lack of organisational input, for example from outreach activity.

5.38 A recent Scottish study (Philip et al. 2003) identified that older people in rural areas of Scotland are some of the most deprived in the UK in terms of income. Furthermore, they experience difficulties gaining access to formal services. Philip et al. suggest that the supply of informal care in rural areas is likely to decline in the future due to the movement of younger people towards urban centres. Clearly, this is an area for vigilance in terms of the provision of services for older people, including personal care services.

5.39 Older age itself may exclude people from access to certain services. For example, a Scottish study (Clark, Sharp and MacIntyre 2002) showed that older people were less likely to become involved in or to complete programmes of cardiac rehabilitation; Collier (2005) argues that mental health services discriminate against older people. Again, this is a matter for vigilance in relation to personal care services.

Adequacy of service provision

5.40 Issues of equity shade into issues of adequacy, in that even where access to services is relatively equitable, there may remain issues in terms of the appropriateness and/or quality of the services thus provided. These matters are linked with our previous and later discussions of quality.

5.41 Demographic trends have been a preoccupation of researchers examining the adequacy of service provision. Particular issues include trends in the BME population whose age profile will alter dramatically in the coming decades (Harper and Levin 2005). This work echoes the concerns about unmet need and equity raised above. Assous (2001), taking an international perspective, questions systems of support that rely heavily on family support, using demographic evidence. Other demographic issues that have been researched include rates of disability with age - one project (Aijanseppa et al. 2005) found that the rate of disability among older people has decreased in recent years in Europe, though as we discussed earlier, this is a complex area of research. Others explore the demography of the workforce which may be needed to supply care needs, especially in the context of demands for improved quality - for example McClimont (2002) perceives an impending crisis in this area due to labour shortages.

5.42 Not all the demographic work suggests negative futures however - for example, Frankel et al. (2000) question the conventional view of demand for services overwhelming supply. They suggest that there is a lack of real evidence for this, and that questions about the limits of both supply and demand require fuller investigation.

5.43 Much research has identified deficiencies in various aspects of care and support for older people. Only rarely is personal care singled out for separate consideration, but many of the services criticized involve an element of personal care, and, unless there is an indication to the contrary, we have therefore assumed that the criticisms apply generally to all aspects of the service in question.

5.44 Examples of deficiencies identified in the wider literature include lack of mental health care for older people in care homes (Purandare Burns, Challis and Morris 2004, Manthorpe and Iliffe 2005); limited availability of physiotherapy and occupational therapy in UK care homes (Barodawala, Kesevan and Young 2001); a general lack of attention to spiritual care (Mowat and Ryan 2002); lack of flexibility in home care services, which could be promoted by purchasers' requirements (Patmore 2004); and limitations on service in rural areas and for BME groups (see above).

5.45 In Scotland, there is already evidence that quality matters are influencing the adequacy of service provision. The Care Commission's (2004) review of the quality of care homes has raised important questions about their adequacy for older people - care homes are of course key sites for the delivery of personal care and have received significant amounts of the resources for free personal care. Care Commission inspection reports (Care Commission 2004) suggest that care homes for older people are the most likely of all care homes to fail to meet regulatory requirements. Whilst the residents will usually report that they are content with services, this sector also records the highest number of complaints, which come predominantly from family and friends of residents. The report notes that one of the Care Commission's tasks is to raise people's expectations of service standards. This intention provides an important element of the context in which services for older people are provided in Scotland.

5.46 Audit Scotland's (Accounts Commission for Scotland 2001) report on home care for older people made a comprehensive list of recommendations for improving these services. These included improvements in quality; more consultation with and involvement of clients and informal carers in decisions about care packages; more flexibility in service delivery, such as in timing of services; better management of services by local authorities; more joint working and better use of staff with particular skills as well as effective training; attention to staffing issues such as better deployment, better control of losses through sickness absence, less out of hours payments (which make local authority provided services relatively expensive); and more effective record keeping in all areas. Thus both regulators see much scope for improvement in care homes and in care at home.

5.47 Staff perspectives also have a bearing on service quality, in respect of their job satisfaction, training needs, commitment to their work and so on. There is some cause for concern in this area in the research of Schofield et al. (2005) who identify particularly low morale among UK qualified and unqualified nursing staff working with older people, and changes in the workplace affecting service quality.

5.48 One way of considering adequacy is to look at outcomes. There is very little research which adopts this strategy and a lack of agreement on appropriate outcomes. Service quality assessment requires attention to all aspects of the care process, including management. Clarkson and Challis (2003) identify a number of ways in which the quality assessment and quality assurance of care management in the UK needs to be improved, drawing lessons from other countries. A key concern is the quality of data collection and recording, which has been raised by several researchers, such as Brown, Tucker and Domokos (2003), Bell and Bowes (2006), Burnett, Cavanagh and Shearer (2002), Harrison and Heywood (2000), Payne et al. (2000) and, with reference to eleven European countries, Carpenter et al. (2004). Some of the data needed are likely to be qualitative. For example, Bamford and Bruce (2000) explore the need for outcome measures which reflect the intentions of services as well as the views of those who receive them. They argue that for people with dementia, one key outcome is a sense of autonomy for clients - this emerges from work with people with dementia themselves, and exemplifies a number of recent studies which have focused on client views and experiences as ways of evaluating outcomes.

Results from the survey of Scottish local authorities

5.49 Our survey of Scottish local authorities included questions relating to unmet need for personal care and other non-personal domiciliary care services. First, we tried to establish understandings of the term 'unmet need'. 17 authorities provided their definitions. Several acknowledged that unmet need was "a contested concept" and that "it is difficult to give a definition of unmet need which would be universally accepted" and the range of responses reflected this.

5.50 Several authorities recognised that the concept could be defined from both service user and service provider perspectives. One of the more holistic definitions suggested that

"unmet need is the difference between what we know to be the target population, e. g. vulnerable elderly population, and the number of people we provide a service to' This would reflect all types of unmet need whether due to potential clients not seeking services or services not being available. A further type of unmet need is after a client has been assessed where 'Unmet need' is need which has been identified through the assessment process, but cannot be provided because the service is at capacity".

5.51 Many definitions reflected the fluidity of the concept. It was frequently suggested that unmet need equated to "the existence of a waiting list for services to meet the assessed needs of a client", or to "the difference between assessed need and what is able to be provided". These definitions were then qualified by indications that assessments of need are dependent on meeting eligibility criteria, that these criteria are not standardised across authorities and that in a number of authorities, eligibility criteria have become increasingly strict in response to resource constraints.

5.52 Responses to questions about levels of unmet need must be interpreted with caution because of the differing definitions of unmet need and lack of uniformity in eligibility criteria across authorities. Table 5.6 indicates responses on the levels of unmet need for personal care and non-personal domiciliary care in local authorities for 2004/05. 61% of authorities had at least some unmet need for personal care services at home, whilst 72% had at least some unmet need in relation to other non-personal domiciliary care services.

Table 5.6 Levels of unmet need in Scottish local authorities in 2004/05 (n = 18 local authorities)

5.53 Comparing levels of unmet need in 2004/05 with those in 2001/02, the year before the introduction of free personal care, 55% of authorities (10 out of 18 respondents) thought that the level of unmet need for personal care services in 2004/05 was higher than it had been in 2001/02, with only one authority perceiving their level of unmet need for personal care to have decreased. For non-personal domiciliary care services between 2001/02 and 2004/05, 65% of authorities (11 out of 17 respondents) perceived increases and only one authority a reduction in unmet need.

5.54 Amongst the reasons suggested for increasing unmet need, authorities variously noted: increased awareness of free personal care and raised expectations as a result of this and other policies related to care in the community; demographic changes; decreases in numbers of hospital beds, earlier discharges from hospital, and policies for the provision of home care for a period following discharge; decreasing numbers of care home places and increased use of intensive home care packages; changes in manual handling regulations; home carer recruitment difficulties; increasing costs of care provision, loss of income following the introduction of free personal care and increasing budgetary constraints. The one authority that had indicated decreases in unmet need for both personal and non-personal domiciliary care attributed this to increased staff, improved assessments and the use of private sector resources.

5.55 For 2005/06, 53% of respondent authorities (9 out of 17) foresaw an increase in unmet need for personal care services, with 65% (11 out of 17) foreseeing an increase in unmet need for non-personal domiciliary care services. One authority expected to see decreased levels of unmet need for both personal and non-personal domiciliary care services.

5.56 The reasons advanced for these potential increases were broadly similar to those suggested for the increases in unmet need noted since the introduction of free personal care. In addition authorities noted: the increasing proportion of older people aged 85 and over; recent advice suggesting changes to previous charging for food preparation; and increasing budgetary pressures, including lack of budget uplift in 2005/06. A number of authorities saw continuing budgetary constraints as likely to lead to increasingly stringent eligibility criteria for non-personal domiciliary care services.

5.57 We also attempted to collect data on the numbers of clients aged 65 and over in each authority who were either waiting for assessment or who had been assessed but were awaiting different types of service provision as at five different dates; 31 March in years 2002, 2003, 2004, and 2005, and 31 September 2005. Eight authorities provided full or partial data on numbers of applicants waiting for assessments, with ten authorities providing data on numbers waiting for provision of services or payments. A further six authorities stated that these data were unavailable.

5.58 In relation to assessment for free personal care services, only one authority suggested that they had had applicants waiting on any of the dates in question. They suggested that around 25 clients had been waiting for assessment in 2002, with this number increasing between 2003 and 2004. Two authorities identified clients waiting for assessments for domiciliary care assessments, with numbers remaining static at around 10 in one authority, but increasing from 6 to 39 over the period in the other authority.

5.59 Six of the ten authorities who provided data on the numbers of clients who had been assessed as requiring and were waiting for personal care services had clients waiting as at 31 September 2005. The numbers waiting at that date varied in different authorities, with 23 the lowest and 65 the highest number waiting for service provision. For the majority of these authorities there had been an increase in numbers waiting since 31 March 2002, with two authorities having no clients waiting prior to 31 March 2004. Two authorities indicated clients waiting for free personal care payments relating to care home places. Direct payments for free personal care services at home have been available since 31 March 2005. One authority indicated that it had 2 clients waiting for such payments as at 31 September 2005.

5.60 A number of problems are apparent with the data on waiting lists. First, not all respondent authorities were able to complete this section, so there is a limited amount of information. Second, some authorities suggested that prior to assessment it was inappropriate to categorise applicants as waiting for assessment for a specific purpose such as for free personal care services and did not supply data on applicants waiting for assessment. Third, although data indicate how many applicants were requiring assessments or had been assessed and were requiring services at the specified dates, no data was requested on the average "waiting" times experienced by applicants, whether figures were subject to seasonal or other variation, and whether the figure provided was lower, higher or similar to the authority's mean number of "waiting" applicants across the year as a whole. It is in any case doubtful whether such data are available. Fourth, it is not clear if all authorities supplied comparable data. One authority indicated specifically that they had no applicants waiting beyond "Agreed waiting times", but we do not know if other authorities applied this criterion in collating their responses.

Conclusion

5.61 To conclude, this discussion of unmet need has raised a number of important issues. The first of these is that there are a variety of ways to define unmet need. These are quite fundamental to understanding its quantitative significance. Neither the discussion of unmet need by the CDG, nor more recent research, has fully explored these issues. Our review of the literature suggests that this is not a strong research area. There are types of demand that might be expected not to be fully met, such as that relating to BME groups. There may also be unmet demand among low income individuals, but as we shall discuss in the next chapter, such demand may not be relevant to the policy of free personal and nursing care since such individuals would not have been able to pay for personal care had they been able to register their demand.

5.62 The survey information is quite inadequate due to the smallness of samples in general surveys. Further, self-evaluation or evaluation by another family member, which is the approach taken by most surveys, are forms of 'felt-need'. A professional evaluation (of 'normative need') might lead to the conclusion that service provision could not be justified on the basis of the assessment tools (such as SSA- IoRN) that have been adopted to ensure equity of treatment of those requiring care.

5.63 Indirect analysis, such as the use of AA data would need to be reinforced by a clearer understanding of the reasons why the AA population differs from that which uses local authority social services and why the ratio of AA claimants to local authority clients varies from authority to authority.

5.64 The wider research literature suggests that unmet need is indeed difficult to research and is rarely directly addressed. Much indirect evidence is however available concerning certain groups which do not seek service support despite need and/or who face exclusionary processes which mean their needs are not met. The literature also identifies certain pressure which may promote unmet need, such as rising expectations and quality standards.

5.65 The survey of local authorities showed varying definitions of unmet need, but wide agreement that it had risen since 2001-2002, partly due to free personal care which was perceived to have promoted demand. The survey produced limited data on actual numbers of people waiting for assessments or services

Gaps and weakness in the data on unmet need:

5.66 There is a need to be clear about what precisely is meant by unmet need.

5.67 Unmet need was an integral part of the CDG costing, but existing information on unmet need is based on poor quality data. Different approaches to unmet need yield contradictory results.

5.68 The link between benefit payments associated with personal care - Attendance Allowance - and the demand for personal care from local authority social services is also poorly understood. This is true not just in Scotland but throughout the UK.

5.69 There are difficulties for local authorities in supplying detailed data about unmet need and waiting lists.

Suggestions for improvements:

5.70 Clarify definition of unmet need that is relevant to the policy of free personal care.

5.71 Consider how existing survey information could be improved to identify this form of unmet need.

5.72 Investigate the forms of service being purchased by or given to those receiving Attendance Allowance but not local authority support.

5.73 Improve record keeping systems in local authorities, which permit appropriate data to be retrieved in a way that is comparable with other authorities.

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