Health Survey for England: social care data Margaret Blake and Rachel Craig, NatCen

Development of the social care questions 1.

Need for new survey questions Lack of robust survey data on social care for policy development Need for information reflecting current developments: how care is provided and paid for personalised care with personal budgets and direct payments Adult Social Care Survey 2010/11 – views of service users Survey of Adult carers in England Survey of Carers in Households 2009/10 – informal care providers

Development project Funded by the Nuffield Foundation, Department of Health Carried out by : Personal Social Services Research Unit (PSSRU) at LSE and University of Kent Health Economics Group at the University of East Anglia NatCen Social Research Aim to produce a module of questions for use in: Longitudinal or cross sectional surveys on community based care Economic evaluations

Approach Review of existing survey questions - receipt of formal and informal care Consultation with key stakeholders on existing questions, potential to use administrative data Systematic review of relevant economic evaluations Based on these, development of a new module of questions Extensive cognitive testing and piloting of the new module.

What the module covers Focus on: People aged 65 and over Living in the community Task based approach: ADLs and IADLs Policy relevant: Up to date Flexibility to adapt for future changes Designed for England

Social care module: need for and receipt of care Shorter versionFull version Need and receipt of care Who provides care(more detail) Hours of care provided+ Patterns of care Payments for care+ Amount paid Other services used + Aids and equipment For those aged 65 and over

Social care module: provision of care For those aged 16 and over Shorter versionFull version Whether provide informal care Characteristics of people cared for Hours of care provided+ Patterns and type of care Effects of caring+ Detail

Inclusion in Health Survey for England HSE first survey to use the module Funded by Health and Social Care Information Centre (HSCIC) Links social care with physical/ mental health, wellbeing (Limiting) longstanding illness Blood pressure, obesity, lifestyle factors Potential for further links to HES, mortality HSE widely used as a comparator Potential for (qualitative) follow up

The challenge for the HSE Five minutes of interview time on average Time cap for maximum session to limit the interview burden Many modules especially time intensive for 65+ So shorter module required for core HSE survey Repeated each year from will include the full module

HSE 2011 data Report published December 2012 Includes chapter on social care Data will be available in UK Data Archive from March 2013

HSE results 2.

Ability to perform activities: ADLs MenWomen Base: Aged 65 and over Do with difficulty Only with help Cannot do

Need for help: summary Men Women Base: Aged 65 and over At least one ADL At least one IADL

Unmet need Men Women Base: Aged 65 and over At least one ADL At least one IADL

Need for help: equivalised household income (tertiles) Men Women Base: Aged 65 and over

Who is providing care: ADLs for women Informal helpers only Both Formal helpers only None

Payment for care Small numbers so far – receiving formal care or 20+ hours of informal care 12% of men and 20% of women reported Direct Payments 5% and 6% reported Personal Budgets 77% of men, 69% of women reported no local authority involvement in arranging care

Payment for care 56% of those receiving formal care pay all the costs 10% pay some costs 29% do not pay Very few make any payment for informal care

Provision of care in last month Men Women Base: Aged 16 and over

Provision of care in last month: by income Men Women Base: Aged 16 and over

Care provided in last week Around half provided 1-9 hours of care 28% of men, 33% of women provided 10+ hours …including 19% and 22% providing 20+ hours Women more likely to help with bathing, dressing, eating Men more likely to help with stairs, getting around indoors

Beyond the chapter: further data available 3.

HSE HSE chapter only provides topline results When data are in the archive, full details of all questions Limited sample size, especially for those with complex care needs, those paying for care Will be able to combine successive years’ data when available HSE 2013 includes more detail on payments etc Further funding from Nuffield Foundation obtained for additional analyses and dissemination

English Longitudinal Study of Ageing Module also included in ELSA 2012/13 Wave 6 Longitudinal sample of those aged 50+, recruited from HSE Full receipt module and shortened provider module Slightly adapted to continue longitudinal trends Data available in late 2014 Potential for analysis – wide range of topics

Thank you Margaret Blake Rachel Craig