Developing a Respite Strategy in a Scottish City

Louise Mitchell & Rosemary Chesson

Health Services Research Group The Robert Gordon University

Aberdeen, Scotland

Scotland

Aberdeen

• 212,125 people (Census 2001)

• 185 km2

71 sq. miles

• Granite City

Oil Capital of Europe

Aberdeen:• 4% of 16-74 year

olds unemployed

Scotland:• 6% of 16-74 year

olds unemployed

Oil:• 24% of employees

in Aberdeen City

Aberdeen City Council

• 11,000 employees (approx.)

• 43 elected members (Councillors)

• Responsible for all local government services in Aberdeen

• Works in partnership with a wide range of public, private and voluntary sector organisations in the city and beyond,

Health Services Research Group

Main research themes:

• Carers & respite care

• User Involvement   

• Information needs / user education

   

• Multi-disciplinary & interagency working

   

• Assessment of outcome

Respite Special Interest Group

The RSIG was set up in Grampian to:

• Raise awareness of the need for respite care throughout the area

• Share information • Encourage good practice • Develop shared commitments and

strategies 

Respite Special Interest Group

• Formally constituted organisation

• 60+ representatives of organisations and agencies from Grampian

 

Population

42,116 (19.8%) aged 60+

37,173 (17.5%) with a long term illness, health problem or disability

16,758 (7.9%) provide unpaid care

Development of Project

1. Strategic development proposal submitted

2. Two phases:

i. Research

ii. Production of strategy

3. Council provided funding to RSIG

Key Objectives of Research

• Determine current level of respite provision for Aberdeen residents

• Assess functions of respite care for carers & persons they care for

• Estimate the level of need for services

• Identify the nature & extent of gaps in service provision

Key Objectives of Strategy

• Consult with relevant agencies/groups and identify policy and practice

• Establish Priorities

• Write a draft policy & strategy for respite care in Aberdeen

Definition of Respite

‘... 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, 1996) 

Survey of Care Homes

Distribution

108 homes surveyed

90 in Aberdeen City

18 within 15 miles radius

Response Rate

94.4%

Survey of Care Homes: Questions

1. Does your establishment offer respite?

IF YES, are these designated places?

2. Do you provide a day care service?

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

Survey of Care Homes: Questions

• No. of people who received respite

• Average no. of breaks per person

• Average length of stay

• Occupancy rate (estimate)

• Waiting list

• Provision of emergency respite

• Accommodation for carers

Residential Respite Provision

Of 102 homes, 50

provided respite

27 homes had

designated respite

places

Total no. designated

respite places = 109

Residential Respite Provision (2)

Learning Disability 60

Older People 17

Mental Health 12

Dementia 11

Physical Disabilities 9

Total: 109

Residential Respite Provision (3)

Emergency Respite: 11 homes (8 within 24 hrs)

Carers: 6 homes had accommodation for carers

Day Care: offered by 33% of homes (older people)

 

Case Evidence

10 in-depth case studies

Interviews with carers of people with:

 

• Alzheimer’s disease • Parkinson’s disease

• Head Injury • Rheumatoid Arthritis

• Learning Disabilities • Stroke

• Mental Health Problems

Case Evidence: Main themes

• Consultation and planning

• Information

• Access to Respite

• Respite Setting

• Transport

• Elements of Good Practice

• Financial Implications 

Case Study: Mental Health

Mrs I (58) caring for son (30s)

Caring role:• Household tasks• Financial arrangements• Emotional support

Emotional Support

‘Very demanding, expects people to be there for him’

‘Don’t have a life away from him, even during nights out, he phones constantly’

‘Lucky if I get a couple of hours on my own after work before the door opens’

Mrs I 

Respite

‘Would like to know that someone else is

there for him. Would like peace in my home

and the ability to go out or stay in without

having to think about him or explain

ourselves to him. Just a chance to relax

knowing that he’s being cared for.’

Mrs I  

Respite Services

‘Get told by “system” to leave him and go

away, but we can’t do that. They [the

system] don’t know what they are talking

about.’

Mrs I

Interviewees

• Wide-ranging care

• Carers health

• Resilience of carers

UK Government

UK Parliament • Palace of Westminster

Scottish Parliament • Holyrood

Scottish Local Government• Local Authorities (Councils)• NHS Health Boards

Scottish Local Government

Scottish Local Government

32 Local Authorities– Education– Housing– Social Care

26 sq.miles Dundee City 9942 sq.miles Highland

19,000 Orkney Islands609,000 Glasgow City

Scottish Local Government

15 Health Boards– GPs– Hospitals

903,450 NHS Glasgow

20,000 NHS Orkney

Draft Respite Strategy – Stage 1

Survey of Scottish local authorities & health boards

Response Rate: 31/32 LAs

13/15 HBs

•Four LAs reported having a strategy

•Two HBs reported having a strategy

Documents Received

Respite Strategy 4

Carers Strategy 5

Community Care Plan 8

Community Care Procedures 3

Eligibility Criteria 3

Other 5

Draft Respite Strategy – Stage 2

Compilation of items from associated documents including:

– Quality Standards

– Documents provided by LAs and HBs

– Recommendations for good practice e.g. Lothian Short Breaks

Consultation Documents

Approaches to Respite Care– Strategy Document (Local Authority)

Response - Royal Commission on Long Term Care– Scottish Parliament

The Patchwork Quilt– Research

Respite: The Way Forward in Kent– Research

Consultation Documents

Guidance on Respite Care– Scottish Office guidelines

DoH/SSI: Inspection Standards– UK Government quality standards document

Quality Standards for Local Carer Support Services– Consultation report

A Real Break– UK Government good practice guidelines

Consultation Documents

Short Break Bureau– Local authority leaflet

Quality Care for Older Australians– Australian government information for

carers

Respite Strategy

Definition of Respite Access to Respite

Principles of Respite Elements of Good Practice

Consultation & Planning Respite Setting

Funding & Accountability Transport

Information Monitoring

Respite Strategy: Examples

Definition of respite

2.1 Statutory, health, voluntary and private respite providers should adopt a standard definition of respite

Principles of respite

3.1 The service should be based on the principles of:a) sensitivity to individual needs, wishes and aspirations.

Respite Strategy: Examples

Consultation & Planning

4.1 Aberdeen City’s Respite Strategy must directly relate to the National Carers’ Strategy and all other relevant policy documents.

Information

6.1 A separate respite information strategy for Aberdeen should be published and widely distributed.

Respite Strategy: Examples

Access to Respite

7.10 It is recommended that a Respite Bureau

be set up in order to increase access to and

awareness of services. This follows the

model of Falkirk Council’s Short Break

Bureau and Respite Centres in Australia.

The Bureau could be regarded as similar to

a Travel Agency, co-ordinating respite for

both carers, care recipients and providers.

Consultation on Respite Strategy

• 3 Drafts sent during 2002

• Final consultation:

– 800+ people

– 104 responses received

– Wide range of agencies responded

Issues Identified

• Resources

• Needs of specific groups

• Entitlement to respite (including access)

• Respite provision in hospital

• Vision or operational guidelines? 

Overall Comments

‘Respite care is one of the few services for patients and carers that genuinely makes a difference to their quality of life.’

 

‘..... unless a WILL exists to provide all of this for the patient, nothing will change’.

Respite Strategy Implementation

March 2003• After period of consultation, the Respite

Strategy formally adopted by Aberdeen City Council Joint Community Care Planning Strategy Group

July 2003• 1st meeting of a working group to produce

an implementation plan• Representatives from user organisations,

respite providers and statutory agencies

Carers Research Partnership

• Provide robust evidence regarding the needs of carers and service users

• Develop a joint research agenda

• Extend knowledge of the nature of caring, and especially of carers’ roles

Respite Strategy Working Group

Issues raised:

• Definition

• Entitlement– Priorities for social work– Qualifying for entitlement

Acknowledgements

Aberdeen City Council

The Respite Special Interest Group

All survey participants

All people who contributed to the consultation exercise