List of Tables s1

Louise Mitchell, Rosemary Chesson Health Services Research Group, The Robert Gordon University Contents 2 List of Tables 3 Acknowledgements 4 Summary 6 1.0 Background 8 1.1 Respite provision 8 1.2 Current information on respite 9 1.3 Respite Strategic Development Proposal 11 2.0 Survey Design 12 2.1 Homes: inclusions and exclusions 12 2.2 Questionnaire 13 2.3 Questionnaire Distribution 13 3.0 Results 16 3.1 Response 16 3.2 Provision of Respite 17 3.2.1 Age Range 20 3.2.2 Number of respite recipients 21 3.2.3 Number of respite episodes provided 23 3.2.4 Length of breaks 24 3.2.5 Policy on return stays for respite 25 3.2.6 Occupancy Rate 25 3.2.7 Waiting List 27 3.2.8 Emergency respite 28 3.2.9 Accommodation for Carers 29 3.3 Day care provision 29 3.3.1 Length of day care provision 30 3.3.2 Day care provision and age of users 30 3.3.3 Day care policy 31 3.3.4 Day care waiting list 31 4.0 Discussion 32 4.1 Information on respite 32 4.2 Comprehensive Provision? 33 4.3 Potential Demand 34 4.4 Designated Respite Provision and Occupancy Rates 35 4.5 Emergency Respite Provision 36 4.6 Day Care 36 4.7 Accommodation for carers 37 4.8 Dependency on limited numbers of homes 37 4.9 Respite: A Changing Scene 38 References 42 Appendix 1 48

List of Tables Number Title Page

Table 1 Residential and Nursing Homes surveyed in Aberdeen City and 14 within 15 miles Table 2 Questionnaire response by Home location and type 16 Table 3(a) Number of Homes providing respite and/or day care, by area 17 Table 3(b) Number of Homes providing respite and/or day care, by provider 17 and area Table 4(a) Numbers of Homes with designated respite places 18 Table 4(b) Number of Homes with designated respite places, by client group 18 Table 5(a) Total number of designated respite places by client group and 19 location Table 5(b) Total number of designated respite places by client group and 19 provider Table 6 Homes indicating respite provision ‘if available’, by client group 20 and provider Table 7 Age of respite users, as reported by Homes 21 Table 8(a) Estimated number of respite users by number of homes over 21 previous 12 months Table 8(b) Estimated number of homes per number of users by client group, 22 over previous 12 months Table 9(a) Estimated number of respite users receiving respite by provider 22 over previous 12 months Table 9(b) Estimated number of respite users receiving respite by client 23 group and provider, over previous 12 months. Table 10(a) Estimated number of respite episodes per person, per home over 23 previous 12 months Table 10(b) Average number of respite episodes per person reported by home 24 and client group over previous 12 months. Table 11(a) Estimated bed occupancy rate for designated respite places, by 26 provider over previous 12 months Table 11(b) Estimated occupancy rate for designated respite provision, by 27 client group over previous 12 months Table 12 Number of homes providing emergency respite 28 Table 13 No of day care places by client group and type of home 29 Table 14 Days on which day care is provided, by type of home 30 Table 15 Estimated age of day care users by number of homes 31

Acknowledgements

We are grateful to all nursing and residential home staff who completed the survey questionnaire, and all those who gave up their time to meet with the researcher in the course of the research. Thanks are due also to Mary Stobie, the Respite Special Interest Group, Alan Pilkington, Aberdeen Social Work Department and the staff of the Information and Registration & Inspection units of Aberdeen City Council. We would also like to thank Heather Cunningham for her hard work in the production of this report.

Summary Background: Respite breaks are known to be helpful in reducing stress on carers, as well as being beneficial to the people that they are care for. However, good quality information on respite is difficult to obtain. Therefore, in order to develop a respite strategy for Aberdeen City, research was undertaken into residential respite, since this is a significant part of respite provision.

Aims: The aims of the research were to (1) quantify current respite provision in nursing and residential homes used by Aberdeen residents and (2) assess the extent to which current provision is likely to meet needs.

Study Design: A survey was undertaken to gather data on respite provision in residential and nursing homes, both within Aberdeen City (90 homes) and within a 15 mile radius (18 homes). Questionnaires were sent in April to 98 homes and in July to 10 Aberdeen City Council homes.

Findings: An overall response rate of 94.4% was achieved for the questionnaire survey. Fifty homes provided respite. Twenty-seven of these had designated respite places, together providing a total of 109 designated places. Provision was focused predominantly on elderly people and people with learning disabilities, accounting for 77 of 109 places. People with learning disabilities and their families were also more likely than any other client group to receive four or more episodes of respite over a 12 month period. Three-quarters of users received respite from a non-statutory provider. The occupancy rate of designated respite provision varied between 31% and 100%, with eight homes maintaining a 95% or greater occupancy rate. Eighteen homes kept a list of people waiting for respite, with an overall total of 160 people. Eleven homes could provide emergency respite, eight within 24 hours. Six homes could provide accommodation for carers. One third of homes offered day care, predominantly for elderly people.

Discussion: The research highlights the need for comprehensive respite provision for all client groups. The reliance on a limited number of homes for respite provision has significant implications, especially for emergency respite, since very few homes were able to provide it. A further issue is the high number of people waiting for respite. Recommendations are not included in this report but research findings will be used to underpin the City of Aberdeen Respite Strategy.

1.0 Background

Traditionally residential respite has been the main means of providing respite. Despite the development of domiciliary and family based schemes, residential respite continues to have an important role to play. However, reliable information is lacking regarding the nature and extent of provision both nationally and locally. As part of the development process for an Aberdeen City Respite Strategy we undertook a survey of nursing and residential care homes to establish the availability of respite places.

1.1 Respite Provision In the past, emphasis has been placed on the provision of respite for the benefit of the carer (McNally et al, 1999). However, it is more frequently recognised that respite is equally important for the cared for person and should be a positive experience for them as well as their carer (The Scottish Office Social Work Services Group, 1996). The need for respite among people living alone has also been acknowledged. This has led to increasing use of the term ‘short breaks’ which, it has been suggested, avoids the implication that respite is primarily to reduce the burden of care for the carer and is crisis orientated (Scottish Executive, 2000c).

Despite greater awareness of respite needs, respite care services have developed on an ad hoc basis across Scotland and the provision has been patchy, regarding both the type of respite and client group (Lindsay et al, 1993). There is consensus that current arrangements for respite are unsatisfactory. A preliminary to improving services, however, is to establish accurately the nature and extent of respite provision. Yet information is difficult to obtain.

The demand for respite care is likely to increase over coming years. This is related to a number of factors including: an increasing population of older people; a growth in the number of people with disabilities and long standing illness; more care in the community; and increasing recognition of the needs of carers. 1.2 Current information on respite The availability of even basic information has not improved in Scotland since The Patchwork Quilt (Lindsay et al, 1993). Figures for the availability and usage of respite are limited, and the little information there is, is difficult to access. Often figures on respite are collected as an adjunct to other statistical data collection (Box 1). This has been confirmed by a number of sources, including statisticians from the Community Care Division of the Scottish Executive Health Department.

Box 1: Main Sources of information on respite in Scotland

Scottish Executive Health Statistical Information Note: Home Care Services, Department: Community Scotland 1999 (1999a) Care Statistics Branch Statistical Information Note: Residential Care Homes, Scotland 1999 (1999b)

Number of Admissions to residential homes during the year ending 31 March 1999 by Client Group and Sector; Scotland & Aberdeen City (1999c)

Number of Admissions to residential homes during the year ending 31 March 2000 by Client Group and Sector; Scotland (2000)

Accounts Commission Comparing the Performance of Scottish Councils. for Scotland Social Work 1998/99 (Council Profile & Data Compendium) (1999)

Comparing the Performance of Scottish Councils. Social Work 1999/2000 (Council Profile & Data Compendium) (2000a & 2000b)

Scottish Executive Statistics Release: Vacancy Monitoring in National Statistics Residential Care Homes and Nursing Homes, Scotland 2000 (2000c)

Statistics Release: Residential Care Homes, Scotland 2000 (2000b)

Scottish Community Care Statistics 1999 (2000a)

The problem of obtaining accurate data on respite is well illustrated by the information provided by Aberdeen City Council (Box 2). At the start of this project, the research team obtained information on respite provision from both the Information Unit and Registration and Inspection Department of Aberdeen City Council. When documents from the unit and department were compared, there were a number of discrepancies, particularly in identifying establishments that were providing respite.

Box 2: Main sources of information of respite provided in Aberdeen

Aberdeen City Council List of private, voluntary and local authority Registration & Inspection Unit establishments for Aberdeen City (2001)

Aberdeenshire Council List of private, voluntary and local authority Registration & Inspection Unit establishments for Aberdeenshire (1999)

Grampian Health Board List of registered private nursing homes (2001)

Information Unit, Aberdeen Accounts Commission Indicators for return City Council to Audit Scotland 1999/2000 (Indicator 9: Respite Care) (2000a)

Social Work and Community Development Department. Service Provision Statement. Social Work Statistics for the year 1999/2000 (2000b)

In addition, it should be noted that reliable statistical information regarding residential respite in both statutory and non statutory sectors is difficult to obtain.

A further problem regarding statistical information is that it is not comprehensive, rather the focus is on specific client groups. For example, in local authority statistics, respite is reported by client group, such as elderly people, people with learning disabilities, and children with disabilities.

1.3 Respite Strategic Development Proposal When Aberdeen City Council sought the development of a respite strategy it was essential to establish the current local situation. To achieve this, the authors made initial contact with a number of health and social care professionals working for both local authorities and voluntary agencies. These meetings were supplemented with visits to respite providers. This was carried out in order to gain an inroad into the system and to build up a comprehensive picture of respite. At the same time, a search for current data on respite provision and usage was carried out. This sought to trace data both locally and nationally, through Aberdeen City Council’s Information Unit as well as through the Scottish Executive Health Department, the Scottish Executive Community Care Statistics Department, the Accounts Commission for Scotland and the UK Government Statistical Service.

Since limited information was available from Aberdeen City Council (Social Work Information Department) it thus became necessary to collect our own data. Although other forms of respite provision exist within Aberdeen City, including home-based and family based respite, this report focuses solely on residential care. This was selected since residential respite is a significant element in respite provision (Choi & Liu, 1998) and traditionally plays an important role. In order to obtain reliable information we decided to survey nursing and residential homes. It should be noted that an attempt to collect data on other forms of respite could have been even more problematic and considerably more time consuming.

Survey Aims The main aims were to: 1. quantify current respite provision in nursing and residential homes used by Aberdeen residents

2. assess the extent to which current provision is likely to meet needs

3. identify gaps in provision

2.0 Survey Design

2.1 Homes: inclusions and exclusions Nursing and residential homes throughout Aberdeen City and Aberdeenshire were identified through a number of sources. These included 1) establishments mentioned during meetings with health and social care professionals; 2) entries in the Respite Directory, published by the Respite Special Interest Group (2000) and 3) online databases such as Grampian Caredata (2001) and the A-Z Care Homes Guide (2001).

The names and contact details provided by these sources were then confirmed through the lists of registered residential establishments by Aberdeen City Council (as of 31 January 2001), Aberdeenshire Council (May 1999 but with manual additions) and Grampian Health Board (list dated January 2001). One nursing home that is registered on the Grampian Health Board list is also registered as a residential home with Aberdeen City Council. For the purpose of the study, and to simplify calculations, it was referred to as a nursing home. This produced a combined list of 260 homes.

It was decided to include homes within a 15 mile radius of Aberdeen because we were informed that these were sometimes used by Aberdeen residents. This reduced the Aberdeenshire homes to 13 (from 89), and the Health Board establishments to 28 (from 67), giving a new total of 145 homes. Homes were identified as being within the local authority, private or voluntary sector administration by the use of the Aberdeen City Council Registration and Inspection Department’s criteria. Homes are identified as being private sector if they are run on a profit-making basis, whereas voluntary homes lie within the orbit of organisations and registered charities.

Several of the homes on the Aberdeen City list were not included in the survey, for example, residential units for homeless people. Where there was any doubt as to the service provided, establishments were contacted by telephone and this resulted in 31 exclusions from the survey.

2.2 Questionnaire A questionnaire was developed including 16 items, the majority of which were closed questions (See appendix 1). These were supplemented by open questions that were used to obtain further detailed information. The main areas covered by the questionnaire were: the number of respite and day care places available for different client groups; the number of people receiving respite within the previous 12 months; the length and frequency of breaks; waiting lists; and the provision of emergency respite. A final section was on the provision of day care.

The questionnaire focused on five main care groups: elderly people; people with dementia; people with mental health problems; people with physical disabilities and people with learning disabilities. These were the categories used in the Respite Directory and in the lists provided by the Registration and Inspection Units of Aberdeen City and Aberdeenshire Council and Grampian Health Board.

A definition of respite was given at the start of the questionnaire to clarify terms and avoid confusion. The definition used was that of the Scottish Office Circular Guidance on Respite Care.

‘... any service of limited duration which benefits a dependent person. The distinctive feature of respite care is that the break should be a positive experience for the cared for person and the carer (where there is one) in order to enhance the quality of their lives and to support their relationship. Respite care ... may extend from a few hours to a few weeks.’ (SOSWSG 10/96.)

The questionnaire was piloted in one residential home and one nursing home in Moray. The questionnaire was then revised and minor amendments were made.

2.3 Questionnaire Distribution The final list drawn up for the purpose of this research, comprised 98 residential and nursing homes of which 80 were in Aberdeen City and 18 were within the 15 mile radius of the city. This excluded those administered by Aberdeen City Council, because of a request from the Social Work Information Unit to omit them, as an in-house survey was to be carried out. Questionnaires were sent in February 2001 to all organisations on our list except the Local Authority homes. A stamped addressed envelope was enclosed to encourage respondents to reply and 14 days was allowed for form completion. Reminder letters, including a second copy of the questionnaire and another stamped addressed envelope were sent to the non-responding homes within a week of the original deadline. The remaining homes who had not returned a questionnaire were telephoned two weeks later and agreement sought for the completion of a third copy of the questionnaire. Although we had hoped to include the results of the Social Work Information Unit Survey with our own findings, these were not available after our own investigation was completed. Therefore we decided, in consultation with the Social Work Department, that it would be necessary to distribute our own questionnaire, and these were sent out on our behalf by the Assistant Director of Social Work in July 2001. Table 1 shows the distribution of all homes included in the survey.

Table 1: Residential and Nursing Homes surveyed in Aberdeen City and within 15 miles

Type of Home Local Private Voluntary All Authority Aberdeen City Residential 10 2 55 67 Nursing - 21 2 23 Aberdeenshire Residential 1 - 12 13 Nursing - 5 - 5

All 11 28 69 108

3.0 Results

3.1 Response By 11 April 2001, 94 of the 98 questionnaires were returned giving a response rate of 96% (Table 2). A 100% (18/18) response rate was achieved from those homes within the 15 mile radius of Aberdeen City compared with 95% (76/80) from Aberdeen City itself. Questionnaires were returned by 89.3% of nursing homes and 98.6% of residential homes. Eight of the ten local authority questionnaires distributed on our behalf by the social work department were returned, representing an 80% response rate. However, one home responded with separate answers for the two different sections of the home (elderly people and people with dementia), thus in the following section a total of 9 homes is given. Overall, 102 questionnaires were returned from the 108 that were distributed, representing a 94% response rate overall.

Table 2: Questionnaire response by Home location and type

Aberdeen City Aberdeenshire Total Sent Returned Sent Returned Sent Returned No. (rr)* No. (rr)* No. (rr)* Residential 67 64 (95.5) 13 13 (100) 80 77 (96.3) Nursing 23 20 (87.0) 5 5 (100) 28 25 (89.3)

All 90 84 (93.3) 18 18 (100) 108 102 (94.4) * rr=Response Rate

A decision was made to exclude data provided by one residential home as the service that they provided did not fit the definition of respite given. The home stated that they provided a service for 700 ‘drunk and incapable clients’ over the previous 12 months, with an average stay of nine hours. These clients were frequently referred to the service by the police or social work department.

Where possible, when respondents answered ‘other’ with regard to client group but then specified a condition, their responses were recoded. For example, ‘MS’ responses were included in the grouping ‘People with Physical Disabilities’ and ‘Addiction’ was incorporated into ‘People with Mental Health Problems’. 3.2 Provision of Respite Nearly half of all homes did not provide respite accommodation. Of the 102 homes completing the questionnaire, 47 (46.1%) provided neither respite or day care (Table 3a). These were all non-statutory homes and the majority were in Aberdeen City (Table 3b).

Table 3a: Number of Homes providing respite and/or day care, by area

Type of Home Respite & Respite Day Care No All Day Care Only Only Provision Aberdeen City Residential 9 14 3 38 64 Nursing 10 8 1 1 20 Aberdeenshire Residential 4 1 1 7 13 Nursing 4 - - 1 5

All 27 23 5 47 102

Table 3b: Number of Homes providing respite and/or day care, by provider and area

Type of Home Respite & Respite Day Care No All Day Care Only Only Provision Aberdeen City Local Authority 3 6 - - 9 Private 9 7 1 3 20 Voluntary 7 9 3 36 55 Aberdeenshire Local Authority 1 - - - 1 Private 4 - - 1 5 Voluntary 3 1 1 7 12

All 27 23 5 47 102

Of the 50 homes that provide respite, 27 (25% of all nursing and residential homes) stated that they had designated respite places (Table 4a). Fifteen (55.6%) of these were in the voluntary sector. Of the 27 homes stating that they had designated places, 25 (89.3%) were residential homes. The remaining two homes (9.1%) were privately run nursing homes, one in Aberdeen City and one in Aberdeenshire, each having one respite place for elderly people. The majority of homes with designated places catered for either people with learning disabilities (13 homes) or elderly people (12 homes), as shown in table 4b.

Table 4a: Numbers of Homes with designated respite places

Status of Home Total No of Designated Places Homes Number % of Homes Aberdeen City Local Authority 9 9 100 Private 16 1 6.25 Voluntary* 15 11 73.3 Aberdeenshire Local Authority 1 1 100 Private 4 1 25 Voluntary 4 4 100

All 49 * 27 55.1 * One case no information

Table 4b: Number of Homes with designated respite places, by client group n=27* Homes Learning Elderly Physical Dementia Mental Disabilities Disabilities Health Voluntary 8 5 2 1 2 Local 5 5 1 2 - Author ity Private - 2 - - -

All 13 12 3 3 2 * Homes have designated respite provision for more than one client group.

Nearly all designated respite places (98.2%) were in residential homes. Ninety- four of these 107 places (87.9%) were in Aberdeen City. The majority of designated respite provision (55%) was for people with learning disabilities (Table 5a). Of these, 52 were in Aberdeen City, accounting for 54.7% of all designated places in the city. As table 5b, shows most designated respite places were provided by the voluntary sector, with 69 places.

Table 5a: Total number of designated respite places by client group and location

Aberdeen City Aberdeenshire All Places % Places % Places % Learning Disabilities 52 54.7 8 57.1 60 55.0 Elderly 13 13.7 4 28.6 17 15.6 Mental Health 12 12.6 - - 12 11.0 Dementia 9 9.5 2 14.3 11 10.1 Physical Disabilities 9 9.5 - - 9 8.3

All 95 100 14 100 109 100

Table 5b: Total number of designated respite places by client group and provider

Voluntary Local Private All Authority Learning Disabilities 43 17 - 60 Elderly 5 10 2 17 Mental Health 12 - - 12 Dementia 1 10 - 11 Physical Disabilities 8 1 - 9

All 69 38 2 109

Of the 24 homes (48%) where it was stated that respite could be provided if a bed was available, 12 (50%) could offer respite to elderly people (Table 6). Two of these were residential homes, the other 10 were nursing homes; all were in Aberdeen City. One Aberdeen City residential home stated that they did not usually provide respite, but had done so, as a one-off scenario, for one person within the last year and so completed the questionnaire. This has been included, where appropriate. Table 6: Homes indicating respite provision ‘if available’, by client group and provider*

Private Voluntary All

Elderly 8 4 12 Dementia 6 1 7 Physical Disabilities 1 1 2 Mental Health 1 - 1 Cancer 1 - 1 Other - 1 1

All 17 7 24 * All homes indicating respite provision ‘if available’ were nursing homes, except for 2 residential homes (both elderly clients)

3.2.1 Age Range The majority of homes, 33 of 48 (68.8%), make provision for predominantly older clients (Table 7). For instance 20 nursing homes and 13 of 28 residential homes have respite clients over 65 years of age. Six of the residential homes were local authority homes (five in Aberdeen City) and seven were homes administered by voluntary organisations (five in the city and two in Aberdeenshire).

Five of the 48 homes providing respite (10.4%) had respite provision for under 18 year olds; all of these were voluntary run residential homes and four were in Aberdeen City. Two of these homes, including the Aberdeenshire home, provided respite only to under 18 year olds, one stated that 95% of their clients were aged under 18. Table 7: Age of respite users, as reported by Homes n=48* <18 18 – 25 26 - 64 65 - 84 85+ Type of Home No. of No. of No. of No. of No. of homes homes homes homes homes Aberdeen City Residential+ 4 6 10 12 10 Nursing - - 3 16 16 Aberdeenshire Residential 1 - 2 3 3 Nursing - - 3 4 4 * Homes provide respite for more than one age group + Two cases no information

3.2.2 Number of respite recipients Eight residential homes (30.8%) each provided respite to more than 30 people over the preceding 12 months (Table 8a). These homes provided respite to a combined total of 474 people, representing 53.1% of people receiving respite from the homes surveyed. Four are specialist providers, three of whom provide respite for people with learning disabilities and one for people with mental health problems (Table 8b).

Table 8a: Estimated number of respite users by number of homes over previous 12 months

No. of Users* Residential Homes Nursing Homes All

1 – 4 3 5 8 5 – 9 3 5 8 10 – 19 7 8 15 20 – 29 5 2 7 30 + 8 - 8

All 26 20 46 * Two homes had no users during the previous 12 months Table 8b: Estimated number of homes per number of users by client group+, over previous 12 months n=46* Estimated Learning Physical Mental Elderly Dementia No. of Users Disabilities Disabilities Health 1 – 4 3 3 3 1 1 5 – 9 5 1 1 - - 10 – 19 8 3 3 3 - 20 – 29 5 2 - 1 1 30 + 3 3 1 - 1

All 24 12 8 5 3 + Excludes ‘cancer’ and ‘other’ * Two homes had no users during the previous 12 months. Some homes provide respite to more than one client group.

All four specialist homes were run by the voluntary sector organisations and accounted for 77% of users who received respite from a non-statutory provider. Overall these four establishments provided respite for an estimated 324 people, representing over a third (36.3%) of all people receiving respite (Table 9a).

The non-specialist providers are all Aberdeen City Council managed homes; three for elderly people and one for people with dementia. Over the previous 12 months 150 people, all of whom were over the age of 64, received respite, representing 16.8% of all respite (Table 9b).

Table 9a: Estimated number of respite users receiving respite* by provider over previous 12 months

Type of Home Voluntary Local Private All Authority Aberdeen City Residential 436 207 - 643 Nursing 12 - 141 153 Aberdeenshire Residential 67 - - 67 Nursing - - 30 30

All 515 207 171 893 Table 9b: Estimated number of respite users receiving respite by client group and provider, over previous 12 months

n=49* Type of Home Local Private Voluntary All Authority Elderly 133 127 107 367 Learning Disabilities 37 - 217 254 Mental Health - 2 190 192 Dementia 37 39 14 90 Physical Disabilities 1 17 49 67 * One home did not state the number of users over the previous 12 months.  One voluntary home stated client group as ‘other’ (10 users in previous 12 months)

Additionally, two homes that had stated that they could provide respite had not done so within the 12 months prior to the survey.

3.2.3 Number of respite episodes provided Eleven nursing homes (55%) estimated that all clients received one episode of respite within the previous 12 months (Table 10a). Homes providing respite to people with learning disabilities were most likely to offer four or more episodes of respite per client (Table 10b); these homes also had designated respite provision.

Table 10a: Estimated number of respite episodes per person, per home over previous 12 months

Number Respite Residential Homes Nursing Homes All Episodes Homes 1 7 11 18 2 – 3 7 6 13 4 – 7 5 1 6 8 + 7 2 9

All 26 20 46 Table 10b: Average number of respite episodes per person reported by home and client group* over previous 12 months

n=49 Mental Physical Learning No. of respite episodes Elderly Dementia Health Disabilities Disabilities One episode only Homes with designated 5 - - 1 1 places All Homes 13 5 1 1 1 Two – Three episodes Homes with designated 6 1 1 - 1 places All Homes 10 3 1 1 1 Four – Seven episodes Homes with designated 1 2 1 1 4 places All Homes 2 2 1 1 4 Eight or more episodes Homes with designated - - - 1 7 places All Homes 1 - - 1 7 * Homes provide respite for more than one client group

3.2.4 Length of breaks Forty-six homes (90.2%) stated that they could offer clients a choice in the length of stay and one home stated that this was sometimes possible. This was not possible in four cases. Of the 46 homes who could potentially offer a choice, 36 (70.6%) could offer a one night stay; 38 (74.5%) could offer breaks of between two and seven nights; 41 (80.4%) could offer breaks of eight to 14 nights and 33 (84.6%) could offer breaks lasting 15 or more nights.

The average length of breaks varied from ‘one night twice per week’ to three to five weeks per person per year. The most frequent response given was ‘two weeks’, stated by 24 of 51 homes that provided respite. The next most frequent responses were ‘one week’ and ‘one to two weeks’, indicated five (9.8%) and four times (7.8%) respectively.

3.2.5 Policy on return stays for respite Three of the 42 homes (7.1%) stated that they had a policy on the number of respite breaks per person, per year. Two of these homes, one of which was a residential school, had 16 designated respite beds for younger adults with learning disabilities, providing 14 and 2 beds respectively. The remaining home had one designated respite bed for elderly people. Two of the homes indicated that the policy was influenced by local authority restrictions, referring to registration requirements and a ruling specifying that clients ‘must have so many days at home between visits’. The third home stated that ‘some respite outwith the school is requested’, but that this was only ‘if a resident could not go home to their parents’.

Two homes that did not have a policy on respite provision suggested that ‘Care management’ might have a policy. One further home, a residential school for children with learning disabilities, did not state whether they had a policy on respite provision, but did state that respite was only provided during school holidays.

3.2.6 Occupancy Rate Of the 14 homes with 75% or higher occupancy rate, eight had 95% occupancy or greater (Table 11a). Seven of these were residential homes run by voluntary organisations and one was a private nursing home. All except one were in Aberdeen City. Five of the voluntary run homes were specialist respite providers; four for children and adults with learning disabilities (one in Aberdeenshire) and one for adults with mental health problems. One voluntary run home is a residential school, providing respite for children during school holidays only. The private nursing home and a voluntary run nursing home had only one designated respite place each, for elderly people and people with physical disabilities respectively.

Six homes had occupancy rates of between 75% and 94%. Three of these (one private nursing home in Aberdeen City and two voluntary residential homes, one in the city and one in Aberdeenshire) had only one designated place each, for elderly people. The remaining three homes were run by the local authority in Aberdeen City and provided respite for elderly people, people with learning disabilities and people with physical disabilities respectively. Of the seven homes with occupancy rates of between 50% and 75%, five were run by the local authority: four in Aberdeen City and one in Aberdeenshire. Three had two places each for elderly people and one home had two places, one each for people with physical disabilities and people with learning disabilities. The fifth home, in Aberdeenshire, had three places, one each for elderly people, people with dementia and people with learning disabilities.

Two homes had occupancy rates of less than 50% for their designated respite provision. Both of these were in Aberdeen City and provided respite for people with learning disabilities; one was a voluntary residential home with one place and the other was a local authority home offering two places.

Table 11a: Estimated bed occupancy rate for designated respite places, by provider over previous 12 months n=27 Type of Home < 50% 50 – 74% 75 – 100%

Aberdeen City Local Authority* 1 4 3 Private - - 1 Voluntary+ 1 1 7 Aberdeenshire Local Authority - 1 - Private - - 1 Voluntary+ - 1 2 All 2 7 14 * One case no information + Three cases no information

Homes providing respite to people with learning disabilities were more likely to have higher occupancy rates (Table 11b), however, the two homes with occupancy rates of below 50% also provided respite to people with learning disabilities.

Table 11b: Estimated occupancy rate for designated respite provision, by client group over previous 12 months n=27* Type of Home < 50% 50 – 74% 75 – 100% Elderly+ - 6 5 Dementia - 2 1 Mental Health - - 2 Learning Disabilities 2 2 6 Physical Disabilities - 1 2 * Some Homes provide respite for more than one client group + One case no information Three cases no information

3.2.7 Waiting List Eighteen of the 51 homes (35.3%) providing respite kept a waiting list for respite and all but two were in Aberdeen City. Ten of the homes in Aberdeen City were nursing homes, nine privately run and the remaining home run by voluntary sector organisation. Five homes were voluntary residential homes and one was a local authority home. Of the two Aberdeenshire homes, one was a private nursing home and the other a voluntary residential home.

Three of the 13 homes providing figures (23.1%) had waiting lists of 20 people or more. These were specialist respite providers in the voluntary sector; two of which were providing respite for people with learning disabilities, with 60 and 64 people respectively on their waiting lists. The third home had 20 people on the waiting list and provided respite for people with mental health problems.

Two private nursing homes stated that there was nobody on the list at present, and in a further private nursing home the number was said to be ‘variable’. No information was provided by four homes regarding the length of the list.

3.2.8 Emergency respite Of the 11 homes that could provide emergency respite (22%), 10 were in Aberdeen City (Table 12). Two of these were local authority residential homes, one providing respite for elderly people and one for people with dementia. Four voluntary residential homes stated that they could provide emergency respite, three, including one in Aberdeenshire, for people with learning disabilities and one for elderly people. Five private nursing homes also stated that they could provide emergency respite. Three of these provided respite for elderly people; one for elderly people, people with dementia and people with mental health problems and one for elderly people, people with dementia and people with physical disabilities. However, these five private homes did not have designated respite beds.

Of the 11 homes able to provide emergency respite, eight could provide emergency respite within 24 hours (including four of the private nursing homes without designated respite places). In one local authority home and one private nursing home respite could only be provided within 24 hours if a place was available. One voluntary residential home could not provide emergency respite within 24 hours.

Of the 35 homes that could ‘sometimes’ provide emergency respite, 16 could do so within 24 hours. Twelve could provide respite within 24 hours if they had a place available and five could ‘sometimes’ or ‘perhaps’ provide emergency respite within 24 hours. Two of the 35 homes could not provide emergency respite within 24 hours.

Table 12: Number of homes providing emergency respite

Type of Home Can sometimes Can provide Cannot provide provide Private 14 5 1 Voluntary 13 4 3 Local Authority 8 2 - All 35 11 4

3.2.9 Accommodation for Carers Six homes (11.8%) that provided respite were able to provide accommodation for carers; these were all residential homes, five in Aberdeen City and one in Aberdeenshire. Forty homes (80%) could not provide accommodation for carers. One Aberdeenshire nursing home said ‘possibly’ and two nursing homes, one in Aberdeen City and one in Aberdeenshire said they could if they had a bed available.

3.3 Day care provision Approximately one third of all homes provided day care, as presented earlier in table 3a. The majority of day care places are in Aberdeen City, with 145 places in Aberdeen (Table 13). One hundred and sixteen of the 214 day care places that were available (54.2%) were for elderly people. Of these, 72 (62.1%) were in Aberdeen City, 54 (75%) in nursing homes and 18 (25%) in residential homes.

Table 13: Number of day care places by client group and type of home

Aberdeen City Aberdeenshire All Residential Nursing Residential* Nursing Elderly 18 54 28 16 116 Dementia 10 26 15 1 52 Mental Health 2 5 - - 7 Learning 25 - 6 - 31 Disabilities Physical Disabilities 2 3 - - 5 All 57 88 49* 17 211* * One home provided no information on client group (3 places)

Almost all homes (93.5%) provide day care for five or more days per week (Table 14). One voluntary residential home in Aberdeen City, however, provides day care on Saturdays and Sundays only, with one place for people with learning disabilities (aged 26-64 years). A further residential home in Aberdeen City (voluntary sector residential school) stated that they could provide day care for three days per week for two people under 25 years, who had mental health problems, physical disabilities or learning disabilities.

Table 14: Days on which day care is provided, by type of home

Mon – Sun Mon – Fri Type of Home No. of homes No. of homes Aberdeen City Residential * 4 6 Nursing + 9 1 Aberdeenshire Residential 2 3 Nursing 3 1 All 18 11 * 2 Homes provided day care for less than five days per week + One case no information

3.3.1 Length of day care provision The total number of hours of day care provision that is available varies from day to day, reflecting the manner in which day care is provided by the different homes. Eight of the 32 homes (25%) offer day care on a flexible basis (four nursing homes in Aberdeen City, two in Aberdeenshire and one residential home in each). Of those homes who stated the number of hours that day care was available, the length of provision varied from three and a half hours to 10 hours in Aberdeen City nursing homes, with a mean provision of six hours and 48 minutes. In Aberdeen City residential homes this varied from five hours to 24 hours; the average provision is nine and a half hours, rising to nine hours and 42 minutes on Tuesdays and Wednesdays. In Aberdeenshire, the two nursing homes offered day care for eight and nine hours respectively. The number of hours that day care was provided in Aberdeenshire residential homes varied between a minimum of four and a maximum of nine.

3.3.2 Day care provision and age of users The majority of homes, (22 of 31) providing day care, had clients aged over 65 years (Table 15). Two homes provided day care for under eighteen-year-olds. Both of these are residential homes, one in Aberdeen City (95% of users were under eighteen years). Respondents in six residential homes stated that their residents were aged between 18 - 25 years. Five of these were in Aberdeen City, and one was in Aberdeenshire.

Table 15: Estimated age of day care users by number of homes

n=31* No. of No. of No. of No. of No. of Type of Home homes homes homes homes homes <18 18 – 25 26 - 64 65 - 84 85+ Aberdeen City Residential 1 5 4 5 5 Nursing+ - - 4 10 10 Aberdeenshire Residential 1 1 2 4 3 Nursing - - 3 4 4 * Homes provide day care for more than one age group +One case no information

3.3.3 Day care policy Six homes (five residential and one nursing; all in Aberdeen) providing day care had a policy on the number of days of day care provided per person. Three (50%) referred to a restriction on the number of clients that could be provided with the service. (Two homes able to provide day care to two clients and one to three clients). Two of the remaining homes indicated that day care is provided for residents of the home only. One home that did not have a policy on day care provision stated that ‘Care Management make the decision’.

3.3.4 Day care waiting list Five homes (15.6%) kept a waiting list for day care. This included two nursing homes, as well as two residential homes in Aberdeen City, and one nursing home in Aberdeenshire. Although two Aberdeen City nursing homes kept a waiting list, nobody was on it at present. Overall a total of six people were on the waiting lists of the three homes.

4.0 Discussion

The survey has revealed a number of key facets regarding respite provision in Aberdeen and has major implications for strategic developments. These are discussed further below.

4.1 Information on respite It is well documented that there are problems regarding the availability of data on respite provision (Lindsay et al, 1993). In the course of this research both the Aberdeen City Council Information Unit team and the Scottish Executive Health Department (Community Care Division) statisticians reported information was scarce and often ‘hidden’ among other figures. Information from Health Boards was also hard to find and indeed they do not routinely collect information on respite services.

Part of the problem is that respite provision has not been systematically reviewed. Previous studies on respite, including The Patchwork Quilt (Lindsay et al, 1993), have focused on selected care groups. Usually included are elderly people, people with dementia and adults and children with learning disabilities. Currently a comprehensive picture of respite continues to be required.

A further aspect of the problem is that available information may not be reliable. Aberdeen City Council highlighted this in the review of council statistics for 1999/2000 (ACC Social Work Information Unit, 2000a) stating that published figures ‘could underestimate the picture of respite care provision within the City of Aberdeen’. The Information Department also confirmed that their statistics do not distinguish between people receiving respite concurrently in more than one setting. Furthermore, a statistician from the Scottish Executive Health Department’s Community Care division reported that the data collected, while showing the number of short-term admissions into residential care, does not indicate whether or not any of these were repeat visits. Additionally, the same source indicated that while figures are kept on the use of beds specified for respite purposes, often beds may not be so registered.

Currently, however, the Scottish Executive are investing £11 million in respite care, which is aimed at providing an extra 22,000 weeks of respite care. But the Head of the Community Care Division of the Scottish Executive, Thea Teale, stated at a Shared Care Scotland Conference in October 2001 that the Executive do not know how much of an improvement this is as ‘We don’t know, and local authorities can’t tell us, what is already being provided.’ It was also emphasised that information gathered presently focuses on counting people, while little is known about the nature of services provided. However, the Scottish Executive is hoping to use information from forthcoming Local Authority Outcome Agreements to develop a more qualitative picture.

4.2 Comprehensive Provision? The survey response indicates that the provision of respite is uneven across care groups. In fact, 55% of all places are for clients with learning disabilities. It would appear that this phenomenon is not restricted to Aberdeen City, since South Lanarkshire Council also reports that the emphasis of provision has been on people with learning disabilities and the elderly (Social Work Resources, 2000). This emphasis on provision for particular groups can be explained by the ad-hoc nature of the development of respite provision, as reported by Lindsay et al (1993). In particular, the early emphasis on elderly people (especially those with dementia) and people with learning disabilities explains why respite provision for these two groups is now well established. However, it is by no means certain that current levels even for the above groups meets needs. For example, in Australia, a country recognised as having a best practice policy, Government policy is that residential respite places should be provided on the basis of three places for every 1000 people aged 70 years or older (Aged and Community Care Division, 1999). Implementing this in Aberdeen would require 68 respite places for elderly people compared with the current provision of 13 places.

It has been suggested also that one reason for the emphasis on provision of respite for elderly people could be that respite is being used to introduce people to the idea of permanent residency in residential or nursing homes (Choi & Liu, 1998). 4.3 Potential Demand Demand for respite in Aberdeen may be estimated using the One in Seven (Sutherland & Chesson, 1990) prevalence figures, which calculated that 409 households in Aberdeen contained at least one person with a disability. This suggests that approximately 16,360 households in Aberdeen City have at least one person with a disability (based on a 1 in 40 sample size). Thus as it is possible to estimate from the 1990 survey that 64% of these households have one person with a disability (10,470 people); 23.2% two people with a disability (7,526 people) and 2.8% have three people with a disability living in them (1,472 people). From this an estimate of 19,468 people with disabilities in Aberdeen City may be derived. Current respite provision in Aberdeen, for all client groups, is 95 places, which fails to reflect potential demand especially since estimates are based on 1990 figures. Numbers of people with disabilities are likely to have risen. However, it should be noted that although people may have indicated that they, or someone in their household, had a disability, they may not necessarily want or need respite.

People with cancer or HIV and their carers, may have particular difficulty accessing respite. For example, there is no respite provision for people with HIV or AIDS. Staff at the Infection Unit at Aberdeen Royal Infirmary reported that patients were encouraged to use the ward as a place to go for respite breaks, if necessary. In addition, there are very few respite places for people with cancer, with only one nursing home stating that they could provide respite, but only if they had a place available. Roxburghe House is known to provide respite for people with cancer although they were unable to provide figures for people who had received respite over the previous 12 months, as their database does not allow them to produce these statistics.

There is the potential that some of the 47 homes in this survey which do not currently provide respite may decide to do so in the future. One home stated that they had already provided respite to one person; this had been a one-off situation, but that they may consider providing more respite in the future. Currently, therefore, it is not known how many other organisations may be contemplating offering respite care.

4.4 Designated Respite Provision and Occupancy Rates Our survey indicates that the majority of designated places are generally available in residential homes in either the voluntary or private sectors. Differing registration systems for residential and nursing homes may well affect whether a home has designated respite places or not. Residential homes, registered with the local authority Registration and Inspection Units, are obliged to state the client group catered for as well as registering the number of residential, respite and day care places provided. Nursing homes registered with the local Health Board must state the client group as well as the number of residential and day care places that they will provide. They are not required to identify respite places and indeed Grampian Health Board’s list of private nursing homes indicates that ‘All homes can offer respite care for the category for which they are registered if they have spare beds available’ (GHB, 2001).

One reason for the lack of designated respite provision in the private sector could lie in the definition of a ‘private’ provider in that they are profit-making organisations. A 100% occupancy rate is unlikely regarding respite beds and a home is likely to lose money if they have places unfilled. In the current climate whereby Scottish Care have highlighted the financial difficulties faced by owners, respite may not be an attractive proposition. Despite the known demand for respite, not all homes are running their respite provision at full capacity. Currently, we do not know the reasons for this, but it may relate to a lack of information being provided to users or to those organising respite provision on their behalf. We were told in early interviews with professionals that word of mouth was often the main source of information.

Low occupancy rates may also indicate consumer preference. An important part of respite is whether the carer and user were satisfied with the break. In fact, the three homes with high occupancy rates and waiting lists of more than 20 people, were identified, during the meetings held with health and social care professionals, as being examples of good practice in respite care.

It is also important to note that two homes, although able to provide respite, reported none was provided during the previous year. One was a nursing home in Aberdeen without designated respite provision, where it was stated that they had ‘no vacant beds to offer respite this year’.

4.5 Emergency Respite Provision Residential respite plays an important part in the provision of emergency respite (Choi & Liu, 1998). Our survey indicates a low provision of emergency respite with only 11 homes (less than 10% of homes surveyed) stating that they were able to provide emergency respite, although the majority may offer it, if a place is available. Of the 11 homes providing emergency respite, five did not have designated respite beds and so it can be assumed their provision cannot be relied upon. Furthermore, there are only four homes with designated respite places, largely catering for the elderly, people with dementia and people with learning disabilities, that could provide emergency respite within 24 hours.

4.6 Day Care Provision of day care in residential and nursing homes reflects similar patterns of use as with respite provision, for example, 50% of places provided in Aberdeen City were allocated for elderly people. However, a noticeable difference between respite provision and day care in residential and nursing homes, is that the second highest level of provision is for people with dementia and not people with learning disabilities. This reflects the age groups for whom day care provision is available in residential and nursing homes. Only seven homes (22.6%), five in Aberdeen City provide day care for people under the age of 26 years, compared with 22 homes who provide day care for people aged over 65 years (71%).

4.7 Accommodation for carers It is increasingly recognised that carers may not necessarily wish separation from the person for whom they care. Although providing accommodation for carers is regarded as ‘best practice’ (Weightman, 1999), only six homes in the survey (5.4%) were able to do so.

4.8 Dependency on limited numbers of homes The results of the survey indicate a high reliance on a limited number of homes. This dependency has significant implications for future provision, for example it would be very difficult to maintain the current levels of respite provision, if any of these homes should close. In fact, 760 independent care homes in the UK closed during 2000 (Laing & Buisson, 2001). In the same time, only 145 independent care homes opened, with a net loss of 7,300 places in the non- statutory sector. It has been suggested that the implementation of new national standards for care homes will increase the closure rate (Laing & Buisson 2000). If the non-statutory sector in Aberdeen were to stop providing respite, then the worst affected would be people with mental health problems, with 12 respite places being lost, which represents all of current provision.

On 29 May 2001 Scottish Care, the organisation representing 800 of the 1100 private nursing homes in Scotland warned that payments from local authorities were not sufficient to maintain the required level of care, leading to the possibility of private homes being forced to close (BBC News Online, 2001c). In the Aberdeen City Council area, 19 homes represented by Scottish Care Grampian refused to accept new social work funded residents after 13 June, unless the council agreed to pay increased rates (Williamson, 2001). Two months after this deadline had passed, on 15 August, Scottish Care finally made a temporary funding agreement with COSLA, representing local authorities throughout Scotland, that led to the homes accepting new council-funded residents again (BBC News Online, 2001a).

The ‘ban’ on admissions attracted significant media attention, both locally and nationally. When the media discussed the problems caused by the action, much of the attention focused on the increase in cases of bed blocking in local hospitals, as elderly and frail people could not be moved to nursing homes (Urquhart, 2001, Gallagher, 2001) Less attention was paid to the possibility of increased strain on the families of those waiting for nursing home accommodation or to frail or elderly people being left without adequate care in their own homes.

It is not known precisely how the ‘ban’ on new patients affected respite provision, however, the situation caused confusion for carers, care recipients and social work staff, with at least one carer being told that their planned respite had been cancelled due to the restrictions. In this case, highlighted in a local newspaper, the couple did obtain the planned respite, but it is not known how many other people were in the same situation and did not get the respite break on which they may have been relying (Evening Express, 2001).

4.9 Respite: A Changing Scene In recent years the Scottish Executive has introduced legislation relating to respite provision. Considered below are some of the major documents.

Strategy for Carers in Scotland Published in 1999, this paper sets out the measures aimed at supporting carers in Scotland and reiterates the Scottish Executive’s intention to double the funding for carers’ services from £5 Million to £10 Million. This funding would be used in ‘The promotion of new and more flexible services for carers, including respite care, at a local level’ (Scottish Executive, 1999;3).

Scottish Executive Response to the Royal Commission on Long Term Care Published in October 2000 this document sets out the Scottish Executive’s response to the Sutherland report on the funding of long term care for elderly people. Much of the Executive’s response for the recommendations for carers (recommendation 17) is highlighting pre-existing services for carers (Scottish Executive, 2000a; 14). This includes a reference to the £10 million allocated to carers’ support in the Carers’ Strategy and the provision of an extra 22,000 weeks of respite care.

Social Justice Annual Report 2000 Milestone 21 sets out the Executive’s aim to increase the proportion of elderly people living independently at home, by doubling the proportion receiving respite care at home, as well as increasing opportunities for home care. The report also refers to additional funding for local authorities of £120 million which will be used to provide a number of services which will achieve this aim, including 22,000 extra weeks of respite care and £10 million for enhanced services for carers (Scottish Executive, 2000b).

Community Care & Health Bill The most publicised aspect of this Bill, which will be implemented in April 2002, is that it will allow people to receive free personal care as well as nursing care in care homes (BBC News Online, 2001b). However, the Bill will also formalise joint working between health boards and local authorities, including joint funding and management of health and social care services. In addition the Bill extends the right of carers to receive a carers assessment, by making it possible for them to receive a carers assessment even when the person being cared for does not wish to be assessed. It will also expand access to the direct payments scheme, enabling people to purchase their own non-residential services. Local authorities will be required to provide direct payment schemes for those who want them, including the carer or legal guardian of those who are unable to take them up for themselves (Scottish Parliament, 2001a).

Regulation of Care (Scotland) Act 2001 Again due to be implemented in April 2002, this act will establish two new independent bodies: the Scottish Commission for the Regulation of Care and the Scottish Social Services Council. The Commission will regulate and inspect all care services, including residential and nursing homes, to be referred to as ‘care homes’, as well as home-care services (Scottish Parliament, 2001b). As part of this, Draft National Care Standards were issued in stages (for different care groups) from June 2000 and a consultation paper on care homes was issued in April 2001.

Scottish Executive Response to the Report of the Joint Future Group This report, published in January 2001, is the Scottish Executive’s response to the report of the Joint Future Group (2000), which recommended improvements in joint working between health and social care departments. The report again reiterates the Scottish Executive’s commitment to providing more short breaks, referring back to the ‘Scottish Executive Response to the Royal Commission on Long Term Care’ (Scottish Executive, 2001b).

Local Outcome Agreements Local outcome agreements are an attempt to link Scottish Executive Ministers’ national policies with specific local service targets (Scottish Executive, 2001) and are the result of a joint approach with the Convention of Local Authorities (CoSLA) launched in July 2001. Originally being piloted in the areas of education attainment in schools and children’s services, the Executive has also indicated that they may be used for other priority policies, including improved care services for elderly people. At a Shared Care Scotland Conference in October 2001, the Head of the Scottish Executive Community Care Division, Thea Teale, stated that Outcome Agreements must indicate specific outputs, for example, the number of weeks of respite care that will be provided, and must show consultation with carers and users.

As can be seen from the above, carers’ issues and respite provision are areas that are growing rapidly and therefore policy is currently developing at a very fast rate. It is essential that local strategies are produced urgently. It is worth noting that the SWSOG in 1996 stressed the need for local strategies. However, as has been highlighted in this report, poor quality information has been a major stumbling block to producing a well informed strategy. Therefore, the data presented in this report, obtained as part of the Strategy Development Project, has provided valuable information. Thus, recommendations are not presented here but will be incorporated into the City of Aberdeen Respite Strategy. References

Aberdeen City Council Registration & Inspection Unit (2001) List of Private, Voluntary and Local Authority Establishments for Aberdeen City. Social Work and Community Development Department.

Aberdeen City Council Social Work Information Unit (2000a). Accounts Commission Indicators for Return to Audit Scotland 1999/2000 (Indicator 9: Respite Care). Social Work And Community Development Department.

Aberdeen City Council Social Work Information Unit (2000b). Service Provision Statement. Social Work Statistics for the Year 1999/2000. Social Work and Community Development Department.

Aberdeenshire Council Registration & Inspection Unit (1999, but with manual additions). List of Private, Voluntary and Local Authority Establishments for Aberdeenshire. Housing and Social Work Department.

Accounts Commission for Scotland (1999). Social Work: Comparing the Performance of Scottish Councils 1998/99. Edinburgh: Accounts Commission for Scotland.

Accounts Commission for Scotland (2000a). Social Work: Comparing the Performance of Scottish Councils 1999-2000. Council Profiles. Edinburgh: Accounts Commission for Scotland.

Accounts Commission for Scotland (2000b). Social Work: Comparing the Performance of Scottish Councils 1999-2000. Data Compendium. Edinburgh: Accounts Commission for Scotland.

Aged and Community Care Division (1999). Residential Care Manual. Canberra: Commonwealth Department of Health & Aged Care.

A-Z Care Homes Guide. [online] http://www.carehomes.co.uk/index.htm (accessed 16 October 2001). BBC News Online (2001a). Breakthrough in Care Homes Row. 15 August 2001. [online] http://news.bbc.co.uk/low/english/uk/scotland/newsid_1491000/1491601.stm

BBC News Online (2001b). Free Care Deal for Elderly People [Online] http://news.bbc.co.uk/hi/english/uk/scotland/newsid_1559000/1559427.stm [26 October 2001].

BBC News Online (2001c). Nursing Homes Issue Funds Warning’. 29 May 2001. [online] http://news.bbc.co.uk/low/english/uk/scotland/newsid_1356000/1356562.stm

Choi C & Liu Z (1998). The Use of Nursing Homes and Hostels for Respite Care. Australian Journal on Ageing, 17(2) May 1998.

Evening Express (2001). Mix-Up Shatters City Woman’s Trip to Lourdes. Evening Express, 26 June 2001.

Gallagher P (2001). McLeish Pleads for Care homes to End the Stand-off. The Press & Journal. 15 June 2001.

Grampian Caredata. [online] http://www.caredata.co.uk/index.html (accessed 16 October 2001).

Grampian Health Board (2001). List of Registered Private Nursing Homes. Inverurie: Grampian Health Board.

Joint Future Group (2000). Report of the Joint Future Group. Edinburgh: Scottish Executive.

Laing & Buisson (2000). Care Homes Demand Stabilises - Light at the End of the Tunnel for the Care Homes Sector. Press Release. [Online] http://www.laingbuisson.co.uk/News/careelderly2000.html [Accessed 15 November 2001].

Laing & Buisson (2001). Capacity Loss Continues while Demand Remains Steady in Elderly Care Sector. Press Release. [Online]

http://www.laingbuisson.co.uk/News/careofelderly2001.html [Accessed 15 November 2001]. Lindsay M, Kohls M & Collins J (1993). The Patchwork Quilt. A Study of Respite Care Services in Scotland. A Report to the Social Work Services Inspectorate for Scotland. Edinburgh: Scottish Office.

McNally S, Ben-Shlomo Y & Newman S (1999). The Effects of Respite Care on Informal Carers’ Well-being. A Systematic Review. Disability & Rehabilitation 21(1) 1-14.

Respite Special Interest Group (2000). Directory of Respite Services for North East Scotland. Aberdeen: The Respite Special Interest Group in Association with Grampian Caredata.

Scottish Executive (1999). Strategy for Carers in Scotland. Edinburgh: Scottish Executive.

Scottish Executive (2000a). Response to the Royal Commission on Long Term Care. Edinburgh: Scottish Executive.

Scottish Executive (2000b). Social Justice Annual Report. Scotland 2000. Edinburgh: Scottish Executive.

Scottish Executive (2000c). The Same As You? A Review of Services for People with Learning Disabilities. Edinburgh: Scottish Executive.

Scottish Executive (2001a). Local Outcome Agreements Launched to Improve Public Services. Press Release SE1666/2001

Scottish Executive (2001b). Scottish Executive’s Response to the Report of the Joint Future Group. Edinburgh: Scottish Executive.

Scottish Executive (2001c). The Future for Care Homes in Scotland: A Consultation Paper. Edinburgh: Scottish Executive.

Scottish Executive Health Department (1999a). Home Care Services, Scotland 1999. Statistical Information Note: SEHD/NRCC/1999. Edinburgh: Government Statistical Service. Scottish Executive Health Department (1999b). Residential Care Homes, Scotland 1999. Statistical Information Note: SEHD/RCC/1999. Edinburgh: Government Statistical Service.

Scottish Executive Health Department (1999c). SEHD Community Care Statistics - R1 Return. Table 2: Number of Admissions During the Year Ending 31 March 1999 by Client Group and Sector; Scotland & Aberdeen City. Edinburgh: Scottish Executive

Scottish Executive Health Department (2000). SEHD Community Care Statistics - R1 Return. Table 2: Number of Admissions During the Year Ending 31 March 2000 by Client Group and Sector; Scotland. Edinburgh: Scottish Executive

Scottish Executive National Statistics (2000a). Scottish Community Care Statistics 1999. Edinburgh: Scottish Executive.

Scottish Executive National Statistics (2000b). Statistics Release: Residential Care Homes, Scotland 2000. Edinburgh: Scottish Executive.

Scottish Executive National Statistics (2000c). Statistics Release: Vacancy Monitoring in Residential Care Homes and Nursing Homes, Scotland 2000. Edinburgh: Scottish Executive.

Scottish Office Social Work Services Group (1996). Community Care in Scotland: Guidance on Respite Care. Circular No SWSG 10/96.

Scottish Parliament (2001a). Community Care and Health (Scotland) Bill (as Introduced). Scottish Parliament Bills Session 1 (2001) 34

Scottish Parliament (2001b). Regulation of Care (Scotland) Act 2001. London: The Stationery Office.

Social Work Information Review Group (2000). Local and National Information Requirements for Social Work in Scotland. Joint Statement. Edinburgh: Cosla, ADSW, Accounts Commission & Scottish Executive (Joint Publication) Social Work Resources (2000). Approaches to Respite Care in South Lanarkshire. South Lanark: South Lanarkshire Council Sutherland A & Chesson R (1990). One in Seven. A Study of Disability in Grampian. Part 1 - Nature and Extent of Disability. Aberdeen: Grampian Regional Council Social Work Department.

Urquhart F (2001). Health Chiefs Warn of Problems Ahead in Nursing Care Dispute. The Scotsman. 14 June 2001. [online] http://www.thescotsman.co.uk/text-only.cfm?id=81358

Weightman G (1999). A Real Break. A Guidebook for Good Practice in the Provision of Short-term Breaks as a Support for Care in the Community. Associated Report of the National Strategy for Carers (UK).

Williamson L (2001). Nursing Home Ban Swings Into Operation. The Press & Journal. 14 June 2001.

Appendix 1

Questionnaire Respite Provision in Residential Homes Please answer the following questions by ticking the appropriate box, circling the relevant answer or writing in the space provided.

For the purpose of this questionnaire, respite should be taken to mean:

“... any service of limited duration which benefits a dependent person. The distinctive feature of respite care is that the break should be a positive experience for the cared for person and the carer (where there is one) in order to enhance the quality of their lives and to support their relationship. Respite care ... may extend from a few hours to a few weeks.”

(The Scottish Office. Community Care in Scotland. Guidance on Respite Care. SWSG 10/96.)

1. Using the above definition of respite, does your establishment offer respite? Yes/No Yes/No IF YES, are these designated respite places? 2. Do you provide a day care service? Yes/No

If you have answered ‘NO’ to both questions 1 and 2, please place the form in the envelope provided and post it as soon as possible.

Thank you.

If you have answered ‘YES’ to either of the questions, please proceed to question 3.

Please turn over Provision

3. Please indicate the client groups that you admit and the number of available places for both respite and day care. Client Group Admitted No. of beds No. of respite No. of day care places places Continuing Care (Elderly) People with Dementia People with Mental Health Problems People with Physical Disabilities People with Learning Disabilities People with HIV/AIDS People with Cancer Other (please specify)

4. Please estimate the percentage of your current clients who are aged:

Under 18 18 - 25 26 - 64 65 - 84 85+

Respite

If your establishment DOES NOT provide respite, please proceed to the following section, overleaf.

If you DO provide respite, please proceed to question 5, below. 5. Approximately how many people received respite from you in the last 12 months?

6. Please estimate, on average, the number of respite breaks provided per person, per year.

1 2-3 4-7 8 + 7. Please estimate the average length of respite stay.

8. Can you offer clients a choice of length of stay? Yes/No

IF YES, what options for length of stay can you offer? (please tick all that apply)

1 night 2 - 7 nights 8 - 14 nights 15 + nights

9. Please estimate the occupancy rate for your designated respite provision. (please give as a percentage)

10. Do you have a policy on the number of respite breaks one client can have per Yes/No year? If YES, what is it?

11. Do you keep a waiting list for clients who would like respite? Yes/No

If YES, how many people are currently on it?

12. (a) Can you provide emergency respite? Yes/No/Sometimes

Please explain further

(b) Can you provide emergency respite with less than 24 hours notice? Yes/No

13. Can you provide accommodation for the client’s carer, if it is desired? Yes/No

Please turn over Day Care

If your establishment DOES NOT provide day care, please place the form in the envelope provided and post it as soon as possible.

Thank you.

If you DO provide day care, please proceed to question 14, below.

14. On which days and for how long do you offer day care?

Day care provided Hours available (e.g. 9am - 5pm) Monday Tuesday Wednesday Thursday Friday Saturday Sunday

15. Do you have a policy on the number of days an individual can attend day Yes/No care? If YES, please state what it is.

16. Do you keep a waiting list for clients who would like day care? Yes/No

IF YES, how many people are currently on it?

Please place the completed questionnaire in the supplied envelope and return it by FRIDAY, 9 MARCH 2001. Thank you.

Respite Provision in Nursing Homes

Please answer the following questions by ticking the appropriate box, circling the relevant answer or writing in the space provided.

For the purpose of this questionnaire, respite should be taken to mean:

“... any service of limited duration which benefits a dependent person. The distinctive feature of respite care is that the break should be a positive experience for the cared for person and the carer (where there is one) in order to enhance the quality of their lives and to support their relationship. Respite care ... may extend from a few hours to a few weeks.”

(The Scottish Office. Community Care in Scotland. Guidance on Respite Care. SWSG 10/96.)

1. Using the above definition of respite, does your establishment offer respite? Yes/No Yes/No IF YES, are these designated respite places? 2. Do you provide a day care service? Yes/No

If you have answered ‘NO’ to both questions 1 and 2, please place the form in the envelope provided and post it as soon as possible. Thank you.

If you have answered ‘YES’ to either of the questions, please proceed to question 3.

Please turn over Provision

3. Please indicate the client groups that you admit and the number of available places for both respite and day care.

Client Group Admitted No. of beds No. of respite No. of day care places places Continuing Care (Elderly) People with Dementia People with Mental Health Problems People with Physical Disabilities People with Learning Disabilities People with HIV/AIDS People with Cancer Other (please specify)

4. Please estimate the percentage of your current clients who are aged:

Under 18 18 - 25 26 - 64 65 - 84 85+

Respite

If your establishment DOES NOT provide respite, please proceed to the following section, overleaf.

If you DO provide respite, please proceed to question 5, below. 5. Approximately how many people received respite from you in the last 12 months?

6. Please estimate, on average, the number of respite breaks provided per person, per year. 1 2-3 4-7 8 +

7. Please estimate the average length of respite stay.

8. Can you offer clients a choice of length of stay? Yes/No

IF YES, what options for length of stay can you offer? (please tick all that apply)

1 night 2 - 7 nights 8 - 14 nights 15 + nights

9. Please estimate the occupancy rate for your designated respite provision. (please give as a percentage)

10. Do you have a policy on the number of respite breaks one client can have per Yes/No year?

If YES, what is it?

11. Do you keep a waiting list for clients who would like respite? Yes/No

If YES, how many people are currently on it?

12. (a) Can you provide emergency respite? Yes/No/Sometimes

Please explain further

(b) Can you provide emergency respite with less than 24 hours notice? Yes/No

13. Can you provide accommodation for the client’s carer, if it is desired? Yes/No

Please turn over Day Care

If your establishment DOES NOT provide day care, please place the form in the envelope provided and post it as soon as possible.

Thank you.

If you DO provide day care, please proceed to question 14, below. 14. On which days and for how long do you offer day care?

Day care provided Hours available (e.g. 9am - 5pm) Monday Tuesday Wednesday Thursday Friday Saturday Sunday

15. Do you have a policy on the number of days an individual can attend day Yes/No care?

If YES, please state what it is.

16. Do you keep a waiting list for clients who would like day care? Yes/No

IF YES, how many people are currently on it?

Please place the completed questionnaire in the supplied envelope and return it by FRIDAY, 9 MARCH 2001. Thank you.

Health Services Research Group Faculty of Health & Social Care The Robert Gordon University

TEL: (01224) 263041