Self-directed Support Implementation Study 2018: report 2

3. Data collections and evidence of self-directed approaches to care and support

Current and proposed data collections

Data is being collected on aspects of self-directed support as part of the Social Care Survey and the Health and Care Experience Survey (HACE). An initial SDS User Experience Survey has also been piloted. An assessment of the effectiveness of using evidence from each of these collections for monitoring and evaluation against the SDS Change Map is given below.

Representatives from the Care Inspectorate were contacted as part of the assessment of data collections and evidence that could aid an evaluation of self-directed support. Whilst the Care Inspectorate does not routinely collect data or evidence that could feed into an evaluation of self-directed support, any future evaluation should seek to make contact with the Care Inspectorate to identify what evidence was available at that time.

Social Care Survey (Scottish Government national survey)^[6]

Strengths: An established census gathering information on everyone in Scotland who receives self-directed support. The survey questions include the self-directed support option chosen, gross budget and who contributes to it, for example, social work, housing, and what it is spent on, for example, personal care. The data collected each year is read-through indexed which means that it can be linked to other data sources, such as health data (subject to approval).

Weaknesses: As highlighted by the case studies reports, there is inconsistency in the way self-directed support is implemented across the country and, as a result, it can be difficult to compare data across Scotland and there is no indication about the extent to which supported people have ‘good conversations’ during their assessment which reflects what matters to them and the support they need.

Health and Care Experience Survey (Scottish Government national survey)^[7]

Strengths: A large scale bi-annual survey that gathers information about health and care service users’ experience of care, including their awareness of the help, care and support options available to them, whether they had a say in how their help, care or support was provided and whether they felt treated with respect and compassion.

Weaknesses: The survey is not targeted specifically at people eligible for social care and does not ask people directly about social care. The sample is drawn from all adults in Scotland registered with a GP practice. As a blanket survey there is significant chance of self-selection bias.

SDS User Experience Survey (SDSS) 2016^[8]

Strengths: Contains quantitative data about whether supported people are having their options explained to them and qualitative data about users’ views of the conversations they have had with social care workers.

Weaknesses: This was an ad hoc survey originally piloted with a sample of supported people from three local authority areas and now involving eight more authorities.^[9]  In the pilot, the low response rates meant that insufficient data was collected to enable statistically significant conclusions to be made about supported people’s experiences across Scotland.

Summary of current evidence against the SDS Change Map

The Health and Care Experience Survey of the Social Care Survey currently collect limited information that directly evidence or provide proxy data for the SDS Change Map.

In the SDSS User Survey, there were questions that, in their current form, would provide evidence against the following changes from the SDS Change Map:

SDS Change Map

Outcome 5 People have good conversations with practitioners which respect what matters to them and the support they need

The following questions from the SDSS User Experience Survey are relevant:

• I had a say in how my help, care or support was arranged (extent to which the respondent agrees).^[10]
• Did the person you met discuss the four options with you?
• The person who I met to discuss my support needs explained things clearly to me (extent to which the respondent agrees).
• The person took notice of the things that matter to me (extent to which the respondent agrees).^[11]
• The person understood what I wanted (extent to which the respondent agrees).

Outcome 6 People have access to good quality information advice about support, so they are informed about social care and the variety of personalised options available

The following questions in the SDSS survey would be appropriate to use as a proxy for impact in this area:

• Did you know there was a new way to arrange your support (called self-directed support)?
• Did you feel you understood the options well enough to choose which option you wanted?
• Did you get help or information about choosing how to arrange your support from someone or somewhere apart from the professional you met to discuss your support needs?
• What source did you go to for information? (included family member etc., and professional advocacy organisation).

Outcome 7 People have access to good quality independent advocacy, if they feel it is required

The following questions in the SDSS survey would be appropriate to use as a proxy for impact in this area:

• Did you get help or information about choosing how to arrange your support from someone or somewhere apart from the professional you met to discuss your support needs?
• What source did you go to for information? (included family member etc., and professional advocacy organisation).

Outcome 8 People know the budget available to them and are able to direct it creatively and flexibly

The following questions in the SDSS survey would be appropriate to use as a proxy for impact in this area:

• Have you been told the amount of money you can spend on your support?
• Option 1 - I can spend my money as I want in order to meet my support needs (extent to which the respondent agrees).
• Option 1 - I can do what I want to do, and when I want to (extent to which the respondent agrees)
• My support package is tailored to my needs (extent to which the respondent agrees).
• I can choose what support I receive (extent to which the respondent agrees).
• I have control over who provides my support (extent to which the respondent agrees).
• Option 2 – Were you able to choose who manages your budget?

For Outcome 9 – Outcome 17 there are no questions in any of the current surveys that could be used as proxies for impact against those changes.

In the next chapter, the evidence from the case studies is considered.