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

Below is what will be included in the ASCS Data Return. This is the information that will be collated nationally. The Data Return contains further guidance, a draft version and an unprotected version.

Councils can use the draft and unprotected versions of the data return for internal use, but the final SDCS version must be used for the submission to NHS England. Any completely blank lines (for service users initially selected but subsequently removed from the sample before the questionnaires are distributed for the reasons listed in the sampling frame section 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.

In addition to fields for question response data, the Service User Data worksheet in the data return includes fields relating to running the survey, data about the questionnaire recipients, and administrative data.

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

The mandatory and voluntary fields included on the return are:

• method of collection must also be recorded for all service users when sending out the questionnaires
• whether the service user has responded or not 
• gender of service user
• age (in years) of service user
• ethnicity of service user
• sexual orientation of service user
• religion of service user
• primary support reason of service user
• support setting of the service user
• mechanism of delivery of services provided to the service user i.e. Direct Payment only, Part Direct payment, LA managed personal budget, LA commissioned services only. If a service user has mixed mechanisms of deliveries, we advice the hierarchy previously used in SALT is used to assign the mechanism of delivery for the ASCS
• Reported Health Condition (RHC) of the service user. 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 a mandatory field. The previously used RHCs of ‘Autism (excluding Asperger Syndrome / High Functioning Autism)’ and ‘Asperger Syndrome/High Functioning Autism’, have been removed. All other RHCs will remain voluntary.
• whether an advocate has been used
• whether they need an interpreter
• which language was used
• which version of the questionnaire was used (community/residential and nursing, easy- read)
• whether the service user is a replacement for someone who has been excluded for any reason
• whether this person responded to the original mailing or a reminder

1. Overall, how satisfied or dissatisfied are you with the care and support services you receive?

2a. Thinking about the good and bad things that make up your quality of life, how would you rate the quality of your life as a whole?

2b. Do care and support services help you to have a better quality of life?

2c. Which of the following statements best describes how much choice you have over care and support services you receive?

3a. Which of the following statements best describes how much control you have over your daily life?

3b. Do care and support services help you in having control over your daily life?

4a. Thinking about keeping clean and presentable in appearance, which of the following statements best describes your situation?

4b. Do care and support services help you in keeping clean and presentable in appearance?

5a. Thinking about the food and drink you get, which of the following statements best describes your situation?

5b. Do care and support services help you to get food and drink?

6a. Do care and support services help you in keeping your home clean and comfortable? 6b. Do care and support services help you in keeping your home clean and comfortable?

7a. Which of the following statements best describes how safe you feel?

7b. If you have said you don’t feel safe, can you please tell us why?

7c. Do care and support services help you in feeling safe?

8a. Thinking about how much contact you've had with people you like, which of the following statements best describes your social situation?

8b. Do care and support services help you in having social contact with people?

9a. Which of the following statements best describes how you spend your time?

9b. Do care and support services help you in the way you spend your time?

10. Which of these statements best describes how having help to do things makes you think and feel about yourself?

11. Which of these statements best describes how the way you are helped and treated makes you think and feel about yourself?

12. How often do you feel lonely?

13. In the past year, have you generally found it easy or difficult to find information and advice about support, services or benefits?

14. How is your health in general?

15. By placing a tick in one box in each group below, please indicate which statements best describe your health state today.

1. Pain or discomfort
2. Anxiety or depression

16. Please place a tick in the box that best describes your abilities for each of the following questions.

1. Do you usually manage to get around indoors (except steps) by yourself?
2. Do you usually manage to get in and out of a bed (or chair) by yourself?
3. Do you usually manage to feed yourself?
4. Do you usually deal with finances and paperwork – for example, paying bills, writing letters – by yourself?

17. Please place a tick in the box that best describes your abilities for each of the following questions.

1. Do you usually manage to wash all over by yourself, using either a bath or shower?
2. Do you usually manage to get dressed and undressed by yourself?
3. Do you usually manage to use the WC/toilet by yourself?
4. Do you usually manage to wash your face and hands by yourself?

18. How well do you think your home is designed to meet your needs?

19. Thinking about getting around outside of your home, which of the following statements best describes your present situation?

20. Do you receive any practical help on a regular basis from your husband/wife, partner, friends, neighbours or family members?

1. Yes, from someone living in my household
2. Yes, from someone living in another household
3. No

21. Do you buy any additional care or support privately or pay more to 'top up' your care and support?

1. Yes, I buy some more care and support with my own money
2. Yes, my family pays for some more care and support for me
3. No

22. Did you have any help from someone else to complete this questionnaire?

23. What type of help did you have?

1. I didn't have any help
2. Someone else read the questions to me
3. Someone else translated the questions for me
4. Someone else wrote down the answers for me
5. I talked through the questions with someone else
6. Someone answered for me, without asking me the questions

On the Eligible Population sheet you will need to input data on:

• the eligible population broken down by age group, gender, primary support reason and support setting
• the number of service users excluded from the sample

These items of information are required to calculate confidence intervals, and to assess response rates. It is very important that this data is completed accurately to ensure weights and overall estimates are calculated correctly.

The Validation_Tables tab has been included in the data return to help validate the data within the Service user 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 the 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.