Scottish Government

CHAPTER TWO APPLICATION

Evaluation Objectives

• Explore public awareness, understanding and support for Free Personal Care.
• Evaluate the application process and the balance between referrals and individual applications for Free Personal Care.
• Identify groups of eligible individuals who fail to apply for Free Personal Care and their reasons for not applying.
• Highlight ways in which the application process could be improved to facilitate uptake.

Public Awareness, Understanding and Support for Free Personal Care

2.1 The public attitudes surveys and interviews with users and carers undertaken during the course of the evaluation found that public awareness and understanding of FPC is low but that there is strong public support for the principle of free personal care for the elderly.

Awareness

2.2 The Scottish Executive and local authorities undertook extensive publicity campaigns to publicise FPC at the time it was introduced. All local authorities reported that they had used the information material produced by the Scottish Executive or supplemented this with their own leaflets and publicity material. Some local authorities (e.g. Angus) took out adverts in local newspapers to alert people to the introduction of FPC and their rights and entitlements under the new legislation. In addition, some local authorities (e.g. West Dunbartonshire and Stirling) also set up small dedicated teams to answer public enquiries about FPC through special helpline numbers.

2.3 Despite the publicity, very few older people interviewed in the six case study areas could recall seeing any publicity leaflets about FPC, even when they were shown copies of national or local leaflets.

2.4 The public attitudes surveys suggest that the majority of the public have low levels of awareness of FPC. Two thirds of respondents (67%) to the telephone survey stated either that they had ' never heard' of FPC or that they had ' heard of it but really know nothing about it'. Just over 30% of respondents stated that they had heard of FPC and claimed to ' know a little' or a 'fair amount about it'.

2.5 The postal survey of people aged 65 or over and people who are carers showed a higher level of awareness, with over 50% claiming to ' know a little' or a 'fair amount' about FPC and only 20% stating they had ' never heard of it' (Table 2.1).

Table 2.1: How much would you say you know about the issue of Free Personal Care?

(a) Base = 1,005 general population; (b) Base = 1,327 people aged 65 + and carers
Sources: Scottish Opinion Omnibus Survey, July 2006; Postal Survey, July 2006.

2.6 The telephone survey of the general public found that awareness of FPC generally increases with the age of the respondent with the 55-64 age group having the highest level of awareness (46% of 55-64 year olds claimed to ' know a little' or 'a fair amount' about FPC). Awareness dropped back among the over 65s, with only 35% in this age group claiming to ' know a little' or 'a fair amount' about FPC (Table 2.2).

Table 2.2: How much would you say you know about the issue of Free Personal Care? (by age of respondent)

Base = 1,005 general population
Source: Scottish Opinion Omnibus Survey, July 2006

2.7 The most common way in which respondents had come to know about FPC was to have heard or read about it in the news (just over 50% of respondents). However, it should be noted that the surveys were carried out shortly after the publication of the Report of the Scottish Parliament Health Committee's Care Inquiry and widespread news coverage of issues such as waiting lists and food preparation.

2.8 In both the telephone and postal surveys, only around 20% of respondents claimed to have had direct experience of the policy through personally receiving, or knowing or caring for someone who receives FPC (Table 2.3, rows 2 - 5).

Table 2.3: Ways in which respondents have come to know about Free Personal Care

Note: samples = respondents who are aware of FPC; (a) Base = 538; (b) Base = 1,078
Totals = more than 100% as more than one answer allowed.
Sources: Scottish Opinion Omnibus Survey, July 2006; Postal Survey, July 2006

Understanding

2.9 The public attitudes surveys demonstrate that public understanding of FPC is not necessarily informed by actual experience but is mediated through the experience of others and reports in the media. Interviews with service users and carers found that even amongst people who are directly affected by FPC there is continuing confusion about the policy. The majority of users and carers interviewed for the evaluation had a general awareness of FPC but a low level of understanding of the detail of its operation. For example, the evaluation found that people do not make a distinction between personal and non-personal care. Many users were not clear about which of their home care services are provided free under FPC and which are non-personal care services for which they may be charged. Many users and care home residents reported that their financial matters are dealt with by a relative and they are unaware of the details of how their care services or care home fees are paid.

2.10 The Scottish Public Services Ombudsman's office reported ¹³ that the media coverage of issues such as food preparation and waiting lists for service provision during 2006 had given rise to an increase in enquiries to the SPSO and that many of these enquiries suggest that the public's expectations about how FPC operates and what it will provide had been raised.

2.11 Many local authority staff involved in carrying out assessments reported that people often have raised expectations about their entitlement to services under FPC. Many people are unaware that receipt of FPC is dependent on an assessment of need; that the local authority can charge for non personal care services; and that self funders in care homes will still have to pay their accommodation costs. The view held or supported by the vast majority of stakeholders and council employees interviewed for the evaluation was succinctly put by a council officer as:

"People have a low understanding but raised expectations."

2.12 This view was backed up by the Scottish Parliament Health Committee Care Inquiry report which suggested that there are two prevalent misconceptions about Free Personal Care:

" The first is that under the Act all care costs will be met by the state. The second is a belief that eligibility is universal and not dependent on assessment." ¹⁴

Support

2.13 Public support for care services being provided free to all older people who need help has increased since 2001. For example, in 2001, 64% of respondents (to a public attitudes survey undertaken to inform the deliberations of the Care Development Group ¹⁵) supported the provision of free washing and bathing. By 2006, 76% of respondents in the telephone survey and 80% of respondents to the postal survey supported washing and bathing being provided free to all older people who need help. There were similar increases in support for free provision of all forms of personal and non personal care between 2001 and 2006 (Table 2.4).

2.14 Both 2006 surveys show that a clear majority of the public support care services being provided free to older people who need help, although the level of support for non personal care services such as shopping and housework being provided free is slightly lower than for personal services such as washing and bathing.

Table 2.4: Which of these tasks should be provided free to ALL older people who need help?

(a) Base = 1,005 general population; (b) Base = 1,327 people aged 65+ and carers; (c) Base = 2,354 people aged 55+ and carers
Sources: Scottish Opinion Omnibus survey, July 2006; Postal Survey, July 2006; Public Attitudes to the Provision of Free Personal Care; NFO System Three Social Research and MORI Scotland, 2001

2.15 The 2006 surveys sought respondents' views on whether limits should be placed on the cost of providing care at home for frail older people. Respondents were asked to choose between four options ranging from 'a frail older person should move into a residential or nursing home if providing FPC in their own home involves any additional cost to the public purse' to 'a frail older person should be offered FPC to help them continue living in their own home, as long as they choose, whatever the cost to the public purse.' Large majorities in both surveys (63% in the telephone survey and 60% in the postal survey) favoured placing no limits on the cost of providing FPC at home (Table 2.5).

2.16 The 2006 Scottish Social Attitudes Survey ¹⁶ provides further evidence of public support for FPC. A clear majority (57%) of respondents supported the view that personal care should be provided free to older people who are in need of care without means testing - 'no matter how much money the person has.' However, it should be noted that a significant minority of respondents supported means testing of care: 41% agreed with the statement "who pays should depend on how much money the person has'. In another question, 39% of respondents agreed that ' the best way of government spending a set amount of money for care for older people is to pay for care only for those who can't afford it'.

2.17 The Scottish Social Attitudes Survey also showed that people say they would be prepared to pay more taxes (1p in the £1 on Income Tax) to be spent on personal care for the elderly (24% strongly in favour and 44% in favour, with only 10% against).

Table 2.5: Support for the various options placing limits on the cost of care at home

(a) Base = 1,005 general population; (b) Base = 1,327 people aged 65 + and carers
Sources: Scottish Opinion Omnibus Survey, July 2006; Postal Survey, July 2006

The Application Process and Referral Practices

2.18 FPC is essentially a mechanism for removing charges for personal care services (and nursing care for people in care homes) for people aged 65 and over who are assessed as needing them and who would previously have had to pay for them. Apart from care home residents who are meeting their own care costs (self funders) people do not apply for FPC in the way that one would apply for a state benefit. Elderly people living in the community or being discharged from hospital are referred, or refer themselves, for an assessment that may result in the provision of personal care services. Since the introduction of FPC these services are no longer charged for.

2.19 Someone who may require care services or a place in a care home may request a care assessment (self-refer) or be referred by a carer, a relative or friend (third party) or by a statutory or voluntary agency. The referral could be in writing, by telephone, personal contact or by email.

2.20 Four of the six case study councils were able to provide a breakdown of the source of referrals (although, not all four councils were able to provide a detailed breakdown).

2.21 Significant variations were reported by the four councils that were able to provide a breakdown of the source of referrals (Table 2.6). For example, Angus Council reported that 42% of referrals were either self or third party referrals whilst in Edinburgh only 18% of referrals were recorded as being self or third party referrals. The proportion of referrals recorded as coming from within the Social Work department varied from 10% (Stirling) to 18% (Edinburgh). Referrals from NHS sources (acute and primary combined) varied from 53% (Edinburgh) to 33% (West Dunbartonshire).

Table 2.6: Balance of Referrals (case study councils)

* Third party = referral made on the client's behalf by relative or carer
Sources: Angus, City of Edinburgh, Stirling and West Dunbartonshire Councils (information provided for various periods)

2.22 Whilst it is difficult to draw too many conclusions from these breakdowns it is evident that the NHS - both primary care ( GPs and community nurses) and acute care (mainly resulting from discharge of people from hospitals) - is a major source of referrals for care assessments.

2.23 The importance of referrals from GPs was evidenced in the interviews with service users and carers, many of whom reported that they had heard about FPC from their GP who referred them for assessment (as is shown by the two examples below). The evaluation also identified instances where the user's or carer's GP or Community Nurse formally referred their patient to a social worker or advised them to contact the Social Work Department as the carer could no longer cope with providing the level of care required.

Mr and Mrs P (Dumfries and Galloway) moved into their own flat in a sheltered housing complex with a warden. Mr P had had a stroke and was cared for by his wife. However, Mrs P's doctor referred her to a social worker as she was "worn out caring for her husband'. The assessment of Mr and Mrs P's needs resulted in the provision of a package of personal care including assistance with getting out of bed and bathing. The package also included additional respite care to allow Mrs P to take holidays and 'breaks from caring'.

2.24 The local authority is obliged to undertake an assessment of care needs whatever the source of the referral. No evidence emerged from the evaluation to suggest that the means by which someone is referred for an assessment has any direct bearing on how the assessment is processed. The screening and assessment process as described in Chapter 3 is followed irrespective of how and by whom the original referral is made.

2.25 There is no evidence to show that the means of referral impacts upon the outcome of the assessment. The reason for referral (e.g. hospital discharge possibly requiring care home placement) will have more impact on the outcome of the assessment than the route of the referral (social work, self referral or NHS).

2.26 Few of the users and carers interviewed in the six case study areas could recollect or comment on their experience of the referral process. Most who did mention being referred for an assessment related how the referral / assessment followed either a long period of receiving care from a relative and then either the carer no longer being able to cope, the individual's health worsening (e.g. a stroke), or a crisis situation which resulted in admission to a hospital (e.g. carer becoming ill and no longer being able to provide care). In many of these cases it was the carer who made the initial contact with the Social Work Department, GP or community nurse.

Mr N (Stirling) cares for his wife, who has 'severe Alzheimers' at home. A Community Psychiatric Nurse who visited fortnightly told him he could get help with providing care for his wife. Mr N did not want help at first but eventually was persuaded by family members that he should apply for help, and made contact with the social work department. The assessment resulted in a package of care including FPC.

2.27 In some cases elderly people or their relatives making enquiries about entering a care home were advised at that stage by the care home of their entitlement to a care assessment and the requirement to have an assessment before receiving FPC/ FNC payments. (see below)

Groups not Applying for Free Personal Care

2.28 Very little, if any, systematic research has been carried out nationally or by individual local authorities to assess whether groups of potentially eligible individuals are failing to apply for a care needs assessment. The commonly held view amongst national stakeholder organisations, local authorities and representative organisations that contributed to the evaluation is that:

"By and large the community care system is picking up people who are eligible for support. No client groups are missing out, though some individuals who need services do not approach social services."

(Strategic Director of Community Services)

2.29 Interviews with national stakeholders and local authority staff, along with evidence from interviews with users and carers, and the Postal Survey suggest that those failing to apply for an assessment that may lead to the provision of FPC are mainly people who choose to rely on unpaid carers or pay for their own care services rather than involve the local authority.

2.30 However some individuals remain hidden from social work or health services as they rely on relatives or carers to meet their care needs and are unaware of their possible entitlement to receive community care services and FPC. Some older people and their carers only request help as a last resort when they can 'no longer cope'.

2.31 Interviews with users and carers identified a small number of people who only became aware of their entitlement to an assessment of care needs that might result in the provision of FPC following admission to a hospital or when enquiring about admission to a care home. The cases described below are typical examples of those who relied on informal care and/ or paid for care services before becoming aware of the possibility of accessing FPC.

Mrs R (Stirling) has dementia and lives alone in sheltered housing. Family carers did not find out anything about how to get help for her until she was admitted to hospital and "then they found out just by talking to people at the hospital." They did not know who to ask and when they contacted the Social Work Department they got 'punted about from one to the other until they got hold of the right person' who arranged for an assessment.

Mrs L (Dumfries and Galloway) was living in her own home and latterly with her son and daughter-in-law before entering a care home. She did not know that she could get anything free when she was at home and was paying for three visits a day for help with some personal tasks like bathing and dressing. Her daughter-in-law cooked for her and did the domestic tasks. When she moved in with them for a short time she kept paying for care workers three times a day to help with the personal care as her family were very busy. Not until required to move into a care home did Mrs L and her family approach the council for a care assessment and a FPC contribution to her care home fees.

2.32 Only 1.3% of the people aged 65 or over who responded to the Postal Survey reported that they receive FPC. Ninety per cent of those not receiving FPC said they do not need personal care at the moment, whilst 7% reported that they have a close friend or relative who provides care and support. Six respondents reported that they prefer to pay for their own care and support.

2.33 One hundred and one of the 387 carers who responded to the evaluation's Postal Survey stated that the person they care for is receiving FPC. One third of the carers who reported that the person they care for is not receiving FPC stated that the person they care for ' does not need FPC'. Thirty eight per cent reported that the person being cared for is ' not receiving FPC as they and/ or others provide all the care that the person needs'. This could either indicate a lack of awareness / understanding of the option of applying for FPC (although a large proportion of these carers reported that they are aware of the FPC policy) or a belief that their current arrangements were satisfactory and that the carer and person being cared for believe that they do not need help from the social work department. (Table 2.7)

Table 2.7: Reasons given by carers of older people for the cared for person not receiving FPC

Base = 286 carers of people aged 65+
Source: Postal Survey, July 2006

2.34 Analysis of the responses of the carers who provide care for people who are not receiving FPC showed that they mostly provide non-personal care such as shopping (68%), housework (57%) and cooking (40%). Only a minority provide personal care tasks such as assisting with washing (24%), medication (22%), getting dressed (15%) and getting in/ out of bed (9%).

2.35 The postal survey suggests that there may be some 'hidden unmet need' for FPC which is currently being met by unpaid carers rather than through FPC. However, without these individuals undergoing a care needs assessment it is not possible to say whether their care needs are at a level which would result in FPC being provided through their local authority.

Black and Minority Ethnic Groups and FPC

2.36 The representative of Age Concern's Black and Minority Ethnic ( BME) Elders Group, interviewed for the evaluation, stated that community care services may be failing to meet the needs of BME older people. However there is little quantitative evidence to back up this belief as there are no statistics on the number of BME older people receiving FPC and no systematic analysis of unmet need amongst BME older people.

2.37 Bell and Bowes (2006) found "some indications that people from black and minority ethnic groups were buying personal care services privately, believing that the statutory free service would not be culturally competent." ¹⁷

2.38 The cultural and linguistic needs of people from minority communities need to be taken into account when assessing needs and delivering care, not only in urban areas (where there are more significant numbers of BME older people) but also in rural areas where individuals could experience specific difficulty accessing services and may be more isolated from other members of their BME community.

2.39 Local authorities with black and ethnic minority communities have developed a range of care policies and practices to target BME older people. For example:

• Some local authorities (e.g. City of Edinburgh and Glasgow City Councils) produce information leaflets about community care services in community languages such as Urdu and Cantonese
• Glasgow City Council attempts to recruit care staff from BME communities
• City of Edinburgh Council has developed services, including a sheltered housing complex, to begin to meet the needs of the city's Chinese elders community
• Several local authorities (e.g. Perth and Kinross Council) have developed and are implementing race equality schemes for community care services. ¹⁸

Improving the Application Process

2.40 The evaluation suggests access to personal care services in general and FPC specifically could be improved through the adoption of some or all of the following:

• National and local publicity and information about FPC, including that provided through the media, needs to be clearer about people's entitlement and eligibility for FPC.
• Local authorities should provide clear information to people undergoing a care needs assessment about their eligibility and entitlement to care services and FPC. Local authorities should consult older people's representative groups on the wording of information material to ensure that it is easily understood by the target audience.
• Information (posters and leaflets) about FPC should be available in GP surgeries, day centres and other facilities that are used by older people and their carers.
• Local authorities should ensure that black and minority ethnic groups are made aware of Community Care and FPC through working with relevant representative organisations.
• Local authorities should work with representative organisations to ensure that carers are aware of Community Care services and FPC and how to access these services.

Summary and Recommendations

Public Awareness of FPC

2.41 Two thirds of the public have 'not heard of' or 'know nothing about FPC', whilst just over 30% have heard of FPC and claim to 'know a little or a fair amount about it.' Awareness is highest amongst people in the 55 - 64 age group. (2.2 - 2.6)

2.42 Half of those people who claimed in the postal survey to have heard about FPC 'have heard or read about it in the news' compared to only around 20% who can draw on direct experience of FPC or the experience of relatives or friends. (2.7 - 2.8)

Public Understanding of FPC

2.43 Although people who receive FPC or care for someone who receives FPC generally have a broad understanding of FPC, users in particular tend to have a low awareness of the detail of the policy. The view of national stakeholders and local authorities is that the public have a low understanding but raised expectations about FPC. (2.9 - 2.12)

Public Support for FPC

2.44 A large majority of people support the view that both personal care (e.g. washing and bathing) and non personal care services (e.g. shopping) " should be provided free to all older people who need help." There is also strong support for personal care being provided free without means testing. (2.13, 2.14 and 2.16)

2.45 A majority of people (over 60%) support the concept of frail older people being "offered FPC to help them continue living in their own home, as long as they choose, whatever the cost to the public purse." (2.15)

The Application Process and Referral Practices

2.46 Across local authorities there is significant variation in the source of referrals for assessment. However, it is clear that the NHS is a major source of referrals for care assessments. There is no evidence to suggest that the source of referral has any bearing on outcome. The majority of referrals are triggered by either a deterioration in an individual's health or a withdrawal of unpaid care. (2.20 - 2.27)

Groups not Applying for FPC

2.47 Very little, if any, systematic research has been carried out by local authorities to assess unmet need/ demand for care services either among the general older population or within specific vulnerable groups such as black and minority ethnic groups. The generally held view among local authorities is that ' by and large the community care system is picking up people who are eligible for support'. However, the postal survey found a significant proportion of unpaid carers provide personal care services for older people who do not receive FPC, suggesting that there may be some hidden unmet need for FPC amongst older people who receive support from unpaid carers. (2.28 - 2.37)

Recommendations

R2.1 The Scottish Executive and local authorities should attempt to improve awareness and understanding of FPC amongst the public, service users and carers. All publicity material on FPC and community care services, including information provided to people undergoing needs assessments, should be reviewed to ensure that it provides clear and unambiguous information about FPC and people's access to it. GP surgeries, Day Care Centres and other facilities used by older people and their carers should be targeted for information about community care and FPC.

R2.2 The Scottish Executive and local authorities should consult with older people's and carers' representative groups on the wording and content of information and publicity material about community care and FPC.

R2.3 Local authorities should work with black and minority ethnic groups to ensure that older members of these groups and their families are aware of their entitlement to an assessment for care that may lead to the provision of FPC.