Care questions study

Developing improved survey questions on older people's receipt of, and payment for, formal and informal care

About the study

The next few years will see major changes in the social care system. The Government has recently announced a number of new initiatives, including the Social Care Transformation Programme, a forthcoming Green Paper on the future care and support system and the new Carers' Strategy.

We will need good information to make decisions on how we fund help and support for those who need it. For instance we will need robust information about the people providing and receiving both informal and formal care, such as their financial circumstances and their contributions to care costs.

Information currently collected in surveys about care and support is patchy. The way that help and care are funded now means that people may not distinguish clearly between who provides their services (e.g. private companies), who arranges services (e.g. Local Authorities), and who charges for which services. What is more, developments such as Direct Payments and Personal Budgets are not yet reflected in survey questions.  These new developments may blur the boundary between paid and unpaid care.

The purpose of this study is to develop clear and robust questions for use in social surveys and economic evaluations about:

• receipt of care and support services by older people;
• payment for social care for older people;
• receipt of unpaid, informal care by older people; and
• provision of unpaid, informal care.

This study is jointly funded by the Department of Health and the Nuffield Foundation.

• Study Outline (Word)

Stakeholder consultation

We want the views of people who would make use of survey data on care and support. We would especially welcome your views on what information we most need to collect to understand what formal care is received and what informal care is received and provided.   We would like to be able to usefully supplement information available from other sources, such as councils' adult services data. 

We propose that the care questions will include those involving:

• Community-based social care services, including respite care
• Direct Payments and Personal Budgets for care
• Privately-purchased care
• Community equipment
• Community health services
• Supported housing, such as supporting people funds
• Disability benefits
• User contributions/charges for social services
• Informal care by relatives and friends (receipt and provision)

 We want to know:

1. How useful would questions covering these services and types of support be? 
2. Are some more or less important than other areas?
3. What is the appropriate level of detail at which to collect the data e.g. should privately purchased domestic help be separated from privately purchased help with personal care?

 More generally we want to know:

What do you think is the appropriate level of detail at which to collect data on this subject?  For example,

1. Is it useful to know how frequently formal services and informal care are used and at what level of detail e.g. rough bands or detailed information about frequency in a day/week/fortnight?
2. Is it useful to know about the quantity of use of formal services and informal care and at what level of detail e.g. rough bands or detailed information about hours (or sessions) per day/ week?  Should questions about the quantity of use be task-specific (e.g. time received for help with shopping, bathing, dressing etc?)
3. Is it useful to know where formal services are provided, e.g. at home, at a day centre?
4. Is it useful to know who provides the service and at what level of detail e.g. local authority, voluntary organisation, for-profit organisation?
5. Is it useful to know who pays and how they pay, e.g. do service users make a contribution, does a third party make a contribution (and, if so who makes a contribution and how much is contributed), does the LA pay the full amount, does the user pay via a direct payment?
6. For direct payments and personal budgets is it useful to know on what users spend their money?
7. Is it useful to know how much the service costs?
8. Is it useful to know if users make financial transfers to people providing informal care?
9. Is it useful to know how respondents use disability benefits?
10. In relation to provision of informal care, is it useful to ask about each person cared for in turn (as the General Household Survey used to do)?  Is it useful to ask if people providing informal care have received a Carers' Assessment, a Direct Payment?

We would be very grateful to receive any comments or opinions you may have on these questions or the study more generally. 

Please could you respond by 17th July 2009 to Juliette Malley (Email: j.n.malley@lse.ac.uk| Tel: 020 7955 6134)

The research team

The study is being conducted by researchers at the Personal Social Services Research Unit (PSSRU) at the London School of Economics| (LSE) and University of Kent|, the University of East Anglia| (UEA) and the National Centre for Social Research| (NatCen).

This project is being jointly managed by Margaret Blake (NatCen), Ruth Hancock (UEA) and Raphael Wittenberg (PSSRU, LSE).  Please address any queries you may have about this study to:

Margaret Blake
Email: m.blake@natcen.ac.uk|
Tel: +44 (0)20 7549 7009

Ruth Hancock
Email: r.hancock@uea.ac.uk|
Tel:+44 (0)1603 591107 (direct)
Tel:+44 (0)1603 593602 (secretary)

Linda Pickard
Email: l.m.pickard@lse.ac.uk|
Tel:+44 (0)20 7955 6214

Raphael Wittenberg
Email: r.wittenberg@lse.ac.uk|
Tel:+44 (0)20 7955 6186 (direct)