Appendix J: List of data items to be sent to NHS England

This is what will be included in the SACE Data Return Document. This is the information that will be collated nationally. The Data Return contains further guidance and is available on the SACE, 2023-24 guidance for local authorities. Councils may choose to populate the ‘columns for local use’ for additional data collected locally but these must be removed before submission to NHS England. Any completely blank lines (for carers initially selected but subsequently removed from the sample before the questionnaires are distributed for the reasons listed in the sampling frame), must also be removed.

It does not matter if record numbers are no longer consecutive so long as councils know to whom each submitted record refers should NHS England raise a query.

Note that lines for non-respondents should not be removed and the items highlighted in yellow (mandatory fields) should be completed for non-respondents as well as for respondents. This will enable response bias to be assessed.

The fields needed for the data return are as follows.

The carer data sheet collects the following administrative data and the question responses for everyone in the sample.

Additional guidance on the unknown Ethnic Group codes is provided in the Carers Data – Codes worksheet of the Data Return. 

• administrative data
• method of collection
• whether the carer has responded or not
• age of carer
• gender of carer
• ethnicity of carer
• sexual orientation of carer
• religion of carer
• Method of assessment or review, i.e. whether the carer was assessed jointly with the cared-for person, separately from them, or whether no review or assessment took place during the year (SALT Measure LTS003, Table 3a)
• Support provided to carer – the form of support provided to the carer (Direct Payment only, Part Direct Payment, CASSR Managed Personal Budget, CASSR Commissioned Support only, Information, Advice and Other Universal Services / Signposting or No direct support provided to Carer) (SALT Measure LTS003, Table 1a columns).
• Support involving the cared-for person i.e. whether or not any respite or other forms of carer support were provided to the cared-for person (SALT Measure LTS003, Table 1a, “Respite or other forms of Carer Support delivered to the cared-for person” column).
• Funding Status (cared-for person) – whether the cared-for person is supported and funded by the CASSR; pays the full direct costs of the services they receive, but whose support is arranged by the CASSR; self-funds the services they receive with no involvement from the CASSR; or is not known to the CASSR. Where the cared-for person is partially funded by the CASSR i.e. they pay some of the cost themselves, this should be coded as funded by the CASSR.
• Delivery Mechanism of Long-Term Support for the cared-for person – the form of support provided to the cared-for person by the LA (Direct Payment only, Part Direct Payment, CASSR Managed Personal Budget or CASSR Commissioned Support only – Community setting only – SALT Measure (LTS001).
• Primary support reason of the cared-for person. Some carers assessed will not have a cared-for person linked on the client database or the cared-for person may not have a Primary Support Reason (PSR) identified. In such cases the category ‘unknown’ should be selected. If the council does not provide the support to the cared-for person, but their records include the support reason, then councils can use their discretion as to whether to populate with the PSR or record as unknown.
• Reported Health Condition (RHC) of the cared-for person. This data should be recorded as it appears in council records. This data should be recorded as it appears in council records. To bring recording in line with ICD-11, a new RHC ‘Autism Spectrum Disorder’ (ASD) has been added to the data return. As it may take some time for councils to implement this change, all RHCs are voluntary for 2023-23. The new ASD RHC will be mandatory for all future surveys and the previously used RHCs of ‘Autism (excluding Asperger Syndrome / High Functioning Autism)’ and ‘Asperger Syndrome / High Functioning Autism’, will be removed. All other RHCs will remain voluntary
• whether an advocate has been used
• whether they need an interpreter
• whether a translated version was used
• whether the carer responded to original postal questionnaire or a reminder – voluntary field

1. How old is the person you care for?
2. Does the person you care for have....? (e.g. Dementia, Alcohol Dependency).
3. Where does the person you care for usually live?
4. Overall, how satisfied or dissatisfied are you with the support or services you and the person you care for have received from Social Services in the last 12 months?
5. Has the person you care for used any of the support or services listed below in the last 12 months?

6. Have you used any of the support or services listed below, to help you as a carer over the last 12 months?
7. Which of the following statements best describes how you spend your time?
8. Which of the following statements best describes how much control you have over your daily life?
9. Thinking about how much time you have to look after yourself – in terms of getting enough sleep or eating well – which statement best describes your present situation?
10. Thinking about your personal safety, which of the statements best describes your present situation?
11. Thinking about how much social contact you’ve had with people you like, which of the following statements best describes your social situation?
12. Thinking about encouragement and support in your caring role, which of the following statements best describes your present situation?
13. Thinking about the other people you have caring responsibilities for, which of the following best describes your current situation? Please exclude the person you spend most time helping (always, sometimes or never have enough time, or don’t have additional caring responsibilities).
14. In the last 12 months, has your health been affected by your caring role in any of the ways listed below? (for example tired, depressed, loss of appetite)
15. In the last 12 months, has caring caused you any financial difficulties?
16. How often do you feel lonely?
17. In the last 12 months, have you found it easy or difficult to find information and advice about support, services or benefits?
18. In the last 12 months, how helpful has the information and advice you have received been?
19. In the last 12 months, do you feel you have been involved or consulted as much as you wanted to be, in discussions about the support or services provided to the person you care for?
20. In addition to your caring role, please tell us which of the following also applies to you? For example, retired, employed full-time, employed part-time)
21. Thinking about combining your paid work and caring responsibilities, which of the following statements best describes your current situation?
22. About how long have you been looking after or helping the person you care for?
23. About how long do you spend each week looking after or helping the person you care for?
24. Over the last 12 months, what kinds of things did you usually do for the person you care for?
25. Do you have any of the following? (for example physical impairment or disability; sight or hearing loss; a mental health problem or illness)
26. How many children aged 18 or under do you have parental responsibility for?
27. Did someone help you to complete this questionnaire?
31. Please use the space provided below to describe any other experiences you would like to tell us about, or to write any other comments you would like to make?
32. Would you be happy to be invited to take part in more research?

The Eligible Population sheet collects data on:

• the eligible population broken down by age group and gender
• the number of carers excluded from the sample

At a basic level these items of information are required to calculate confidence intervals for the data and assess response rates.

The Validation_Tables tab has been included in the data return to help validate the data within the carer data sheet. This also provides a series of comment boxes to complete should the return have missing data. This is where explanations for any boxes left blank should be recorded. This is required to remove unnecessary validation queries from NHS England.

The Survey Process Information sheet asks about the survey process and methodology, pertaining to for example, the minimum requirement for responses and the use of additional questions. There is also a space to make general comments about the survey.

This information is used by NHS England to understand how CASSRs have experienced the completion of the survey and to inform future development.