Catalogue of Social Care Data

We may be asking some people to take part in follow-up research for this study in the next year or so.

Would you be happy to be invited to take part in more research?

Note that even if you say “yes” there will be no obligation to take part in the future. Please tick (✓) one box

Yes, I have written my name, address and phone number in the space below
No

If you found the information and advice you received unhelpful, please tell us why and what we can do to make it more helpful for you
*The “please tell us why” box is optional. Responses obtained should not be returned to NHS England

Open text response

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?

There have been no discussions that I am aware of, in the last 12 months
I always felt involved or consulted
I usually felt involved or consulted
I sometimes felt involved or consulted
I never felt involved or consulted

In addition to your caring role, please tell us which of the following also applies to you? Please tick [✓ ] all that apply

Retired
Employed full-time
Employed part-time (working 30 hours or less)
Self-employed full-time
Self-employed part-time
Not in paid work
Doing voluntary work
Other

Thinking about combining your paid work and caring responsibilities, which of the following statements best describes your current situation? Please tick [✓ ] one box

Not in paid work:
I am not in paid employment because of my caring responsibilities
I am not in paid employment for other reasons (e.g. Retired)

In paid employment:
I am in paid employment and I feel supported by my employer
I am in paid employment but I don’t feel supported by my employer
I do not need any support from my employer to combine my work and caring responsibilities

Self-employed:
I am self-employed and I am able to balance my work and caring responsibilities
I am self-employed but I am unable to balance my work and caring responsibilities

About how long have you been looking after or helping the person you care for? Please tick [✓ ] one box

Less than 6 months
Over 6 months but less than a year
Over 1 year but less than 3 years
Over 3 years but less than 5 years
Over 5 years but less than 10 years
Over 10 years but less than 15 years
Over 15 years but less than 20 years
20 years or more

About how long do you spend each week looking after or helping the person you care for? Please tick [✓ ] one box

If other please specify:

0-9 hours per week
10-19 hours per week
20-34 hours per week
35-49 hours per week
50-74 hours per week
75-99 hours per week
100 or more hours per week
Varies – Under 20 hours per week
Varies – 20 hours or more per week
Other – free text

Over the last 12 months, what kinds of things did you usually do for the person you care for?

Please tick [✓ ] all that apply
Personal care?
(Things like dressing, bathing, washing, shaving, cutting nails, feeding, using the toilet)
Physical help?
(Such as helping with walking, getting up and down stairs, getting into and out of bed)
Helping with dealing with care services and benefits? (Things like making appointments and phone calls, filling in forms)
Helping with paperwork or financial matters? (Such as writing letters, sending cards, filling in forms, dealing with bills, banking)
Other practical help?
(Things like preparing meals, doing his/her shopping, laundry, housework, gardening, decorating, household repairs, taking to doctor’s or hospital)
Keeping him/her company?
(Things like visiting, sitting with, reading to, talking to, playing cards or games)
Taking him/her out?
(Such as taking out for a walk or drive, taking to see friends or relatives)
Giving medicines?
(Things like making sure he/she takes pills, giving injections, changing dressings)
Keeping an eye on him/her to see he/she is all right?
Giving emotional support?
Other help?

How many children aged 18 or under do you have parental responsibility for?

0
1
2
3
4+

Did someone help you to complete this questionnaire? Please tick [✓ ] one box

*Councils may seek further information on the category of person who helped here if they wish – but these should only be categories of person (e.g. relative) and not names. Any expanded categories need to be aggregated back to just an overall ‘yes’ category before entering the results onto the data return.

Yes
No

How old are you?

________________ years

Are you male or female? Please tick [✓ ] one box

*Councils may choose to omit the above question if it can be supplied accurately from their current records.

Male
Female
Other

To which of these groups do you consider you belong? Please tick (✓ ) one box
*Councils may choose to omit the above question and supply data from their own records if they are confident of the quality and coverage of the information about the
carer’s assessment of their ethnic origin in their current records. Councils including
this question may break down the categories further if they wish to do so.

White:
English / Welsh / Scottish / Northern Irish / British
Irish
Gypsy or Irish Traveller
Any other White background:
Mixed / multiple ethnic groups:
White and Black Caribbean
White and Black African
White and Asian
Any other Mixed / Multiple background:
Asian / Asian British
Indian
Pakistani
Bangladeshi
Chinese
Any other Asian background
List continued on next page:
Black / African / Caribbean / Black British
African
Caribbean
Any other Black / African / Caribbean background
Other ethnic group
Arab
Any other background
Prefer not to say

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?

*The question above is for local use and can be omitted. Councils do not need to return the data to NHS England for this question.

Large open text box

Do you have any of the following?

A physical impairment or disability
Sight or hearing loss
A mental health problem or illness
A learning disability or difficulty
A long-standing illness
Other
None of the above

Thinking about your personal safety, which of the statements best describes your present situation?
By ‘personal safety’ we mean feeling safe from fear of abuse, being attacked or other physical harm.

I have no worries about my personal safety
I have some worries about my personal safety
I am extremely worried about my personal safety

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?

I look after myself
Sometimes I can’t look after myself well enough
I feel I am neglecting myself

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

I have as much control over my daily life as I want
I have some control over my daily life but not enough
I have no control over my daily life

Which of the following statements best describes how you spend your time?
When you are thinking about what you do with your time, please include anything you value or enjoy, including formal employment, voluntary or unpaid work, caring for others and leisure activities.

I’m able to spend my time as I want, doing things I value or enjoy
I do some of the things I value or enjoy with my time but not enough
I don’t do anything I value or enjoy with my time

Have you used any of the support or services listed below, to help you as a carer over the last 12 months?
They may be provided by different organisations, such as a voluntary organisation, a private agency or Social Services. Please do not include any unpaid help from family and friends.

a. Information and advice
b. Support from carers groups or someone to talk to in confidence
c. Training for carers
d. Support to keep you in employment

Has the person you care for used any of the support or services listed below in the last 12 months?
They may be provided by different organisations, such as a voluntary organisation, a private agency or Social Services.

a. Support or services allowing you to take a break from caring at short notice or in an emergency
b. Support or services allowing you to take a break from caring for more than 24 hours
c. Support or services to allow you to have a rest from caring for between 1 and 24 hours (e.g. a sitting service)
d. Personal assistant
e. Home care/home help
f. Day centre or day activities
g. Lunch club
h. Meals Services
i. Equipment or adaptation to their home (such as a
wheelchair or handrails)
j. Lifeline Alarm
k. They are permanently resident in a care home

*It is possible for councils to add options to question 6 above for local use such as advocacy for carers, help with household tasks and gardening and practical help to complete forms. Additional responses for question 6 should be sent to NHS England for their information using the additional question form. Responses to any additional options should not be returned to NHS England.

For each support or service listed:
Yes
No
Don’t know

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?

We haven’t received any support or services from Social Services in the last 12 months
I am extremely satisfied
I am very satisfied
I am quite satisfied
I am neither satisfied nor dissatisfied
I am quite dissatisfied
I am very dissatisfied
I am extremely dissatisfied

Where does the person you care for usually live?

With me
Somewhere else

Does the person you care for have….?

Dementia
A physical disability
Sight or hearing loss
A mental health problem
Problems connected to ageing
A learning disability or difficulty
Long-standing illness
Terminal illness
Alcohol or drug dependency

How old is the person you care for?

_____________years

If you have said you are extremely worried about your personal safety, can you please tell us why?

*Responses obtained should not be returned to NHS England

Open text response

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

I have as much social contact as I want with people I like
I have some social contact with people but not enough
I have little social contact with people and feel socially isolated

Thinking about encouragement and support in your caring role, which of the following statements best describes your present situation?

I feel I have encouragement and support
I feel I have some encouragement and support but not enough
I feel I have no encouragement and support

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.

I don’t have caring responsibilities for anyone else
I always have enough time to care for them
I sometimes have enough time to care for them
I never have enough time to care for them

In the last 12 months, has your health been affected by your caring role in any of the ways listed below? Please tick [✓ ] all that apply

Feeling tired
Feeling depressed
Loss of appetite
Disturbed sleep
General feeling of stress
Physical strain (e.g. back)
Short tempered/ irritable
Had to see own GP
Developed my own health conditions
Made an existing condition worse
Other
No, none of these

In the last 12 months, has caring caused you any financial difficulties?

No, not at all
Yes, to some extent
Yes, a lot

How often do you feel lonely?

Often or always
Some of the time
Occasionally
Hardly ever
Never

In the last 12 months, have you found it easy or difficult to find information and advice about support, services or benefits? Please include information and advice from different sources, such as voluntary organisations and private agencies as well as Social Services.

I have not tried to find information or advice in the last 12 months
Very easy to find
Fairly easy to find
Fairly difficult to find
Very difficult to find

If you found it difficult to find information and advice, please tell us why and what we can do to make it easier for you

*The “please tell us why” box is optional. Responses obtained should not be returned to NHS England

Open text response

In the last 12 months, how helpful has the information and advice you have received been? Please include information and advice from different organisations, such as voluntary organisations and private agencies as well as Social Services.

I have not received any information or advice in the last 12 months
Very helpful
Quite helpful
Quite unhelpful
Very unhelpful

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?

[The question above is for local use and can be omitted. Councils do not need to return the data to NHS Digital for this question.]

Open response question

Thinking about your experiences during the Coronavirus (COVID-19) pandemic, did you feel you were involved or consulted as much as you wanted to be, in discussions about the support or services provided to the person you care for?

There were no discussions that I am aware of, during the Coronavirus (COVID-19) pandemic
I always felt involved or consulted
I usually felt involved or consulted
I sometimes felt involved or consulted
I never felt involved or consulted

Thinking about combining your paid work and caring responsibilities, which of the following statements best describes your current situation?

Please tick one box:

Not in paid work:
I am not in paid employment because of my caring responsibilities
I am not in paid employment for other reasons (e.g. Retired)

In paid employment:
I am in paid employment and I feel supported by my employer
I am in paid employment but I don’t feel supported by my employer
I do not need any support from my employer to combine my work and caring responsibilities

Self-employed:
I am self-employed and I am able to balance my work and caring
Responsibilities
I am self-employed but I am unable to balance my work and caring
Responsibilities

About how long have you been looking after or helping the person you care for?

Less than 6 months
Over 6 months but less than a year
Over 1 year but less than 3 years
Over 3 years but less than 5 years
Over 5 years but less than 10 years
Over 10 years but less than 15 years
Over 15 years but less than 20 years
20 years or more

About how long do you spend each week looking after or helping the person you care for?

Please tick one box:
0-9 hours per week
10-19 hours per week
20-34 hours per week
35-49 hours per week
50-74 hours per week
75-99 hours per week
100 or more hours per week
Varies – Under 20 hours per week
Varies – 20 hours or more per week
Other
If other please specify:

Over the last 12 months, what kinds of things did you usually do for the person you care for?

Please tick all that apply:
Personal care?
(Things like dressing, bathing, washing, shaving, cutting nails, feeding, using the toilet)
Physical help?
(Such as helping with walking, getting up and down stairs, getting into and out of bed)
Helping with dealing with care services and benefits?
(Things like making appointments and phone calls, filling in forms)
Helping with paperwork or financial matters?
(Such as writing letters, sending cards, filling in forms, dealing with bills, banking)
Other practical help?
(Things like preparing meals, doing his/her shopping, laundry, housework, gardening, decorating, household repairs, taking to doctor’s or hospital)
Keeping him/her company?
(Things like visiting, sitting with, reading to, talking to, playing cards or games)
Taking him/her out?
(Such as taking out for a walk or drive, taking to see friends or relatives)
Giving medicines?
(Things like making sure he/she takes pills, giving injections, changing dressings)
Keeping an eye on him/her to see he/she is all right?
Giving emotional support?
Other help?

Do you have any of the following?

A physical impairment or disability
Sight or hearing loss
A mental health problem or illness
A learning disability or difficulty
A long-standing illness
Other
None of the above

How old are you?

Age in years

Are you male or female?

Male
Female

How many children aged 18 or under do you have parental responsibility for?

0
1
2
3
4+

To which of these groups do you consider you belong?

Please tick one box:

White:
English / Welsh / Scottish / Northern Irish / British
Irish
Gypsy or Irish Traveller
Any other White background

Mixed / multiple ethnic groups:
White and Black Caribbean
White and Black African
White and Asian
Any other Mixed / Multiple background

Asian / Asian British:
Indian
Pakistani
Bangladeshi
Chinese
Any other Asian background

Black / African / Caribbean / Black British:
African
Caribbean
Any other Black / African / Caribbean background

Other ethnic group:
Arab
Any other background

Prefer not to say

Did someone help you to complete this questionnaire?

Please tick one box:
Yes
No

Thinking about your experiences during the Coronavirus (COVID-19) pandemic, how satisfied or dissatisfied are you with the support or services you and the person you care for have received from Social Services?

Please tick one box:
We didn’t receive any support or services from Social Services during the Coronavirus (COVID-19) pandemic
I am extremely satisfied
I am very satisfied
I am quite satisfied
I am neither satisfied nor dissatisfied
I am quite dissatisfied
I am very dissatisfied
I am extremely dissatisfied

Thinking about how much social contact you had with people you like during the Coronavirus (COVID-19) pandemic, which of the following statements best describes your social situation during this time?

I had as much social contact as I want with people I like
I had some social contact with people but not enough
I had little social contact with people and felt socially isolated

Thinking about your personal safety during the Coronavirus (COVID-19) pandemic, which of the statements best describes how you felt during this time?

By ‘personal safety’ we mean feeling safe from fear of abuse, being attacked or other physical harm. We do not mean feeling safe from fear of contracting coronavirus.

I had no worries about my personal safety
I had some worries about my personal safety
I was extremely worried about my personal safety

Does the person you care for have….?

Dementia
A physical disability
Sight or hearing loss
A mental health problem
Problems connected to ageing
A learning disability or difficulty
Long-standing illness
Terminal illness
Alcohol or drug dependency

Where does the person you care for usually live?

With me
Somewhere else

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?

We haven’t received any support or services from Social Services in the last 12 months
I am extremely satisfied
I am very satisfied
I am quite satisfied
I am neither satisfied nor dissatisfied
I am quite dissatisfied
I am very dissatisfied
I am extremely dissatisfied

Has the person you care for used any of the support or services listed below in the last 12 months?

They may be provided by different organisations, such as a voluntary organisation, a private agency or Social Services.

a. Support or services allowing you to take a break from caring at short notice or in an emergency

b. Support or services allowing you to take a break from caring for more than 24 hours

c. Support or services to allow you to have a rest from caring for between 1 and 24 hours (eg. a sitting service)

d. Personal assistant

e. Home care/home help

f. Day centre or day activities

g. Lunch club

h. Meals Services

i. Equipment or adaptation to their home (such as a wheelchair or handrails)

j. Lifeline Alarm

k. They are permanently resident in a care home

[It is possible for councils to add options to question 5 above for local use such as supported employment or special college. Responses to any additional options should not be returned to NHS Digital]

For each data item:
Yes
No
Don’t know

Have you used any of the support or services listed below, to help you as a carer over the last 12 months?

They may be provided by different organisations, such as a voluntary organisation, a private agency or Social Services. Please do not include any unpaid help from family and friends.

a. Information and advice
b. Support from carers groups or someone to talk to in confidence
c. Training for carers
d. Support to keep you in employment

[It is possible for councils to add options to question 6 above for local use such as advocacy for carers, help with household tasks and gardening and practical help to complete forms. Responses to any additional options should not be returned to NHS Digital]

Yes
No
Don’t know

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

When you are thinking about what you do with your time, please include anything you value or enjoy, including formal employment, voluntary or unpaid work, caring for others and leisure activities.

I’m able to spend my time as I want, doing things I value or enjoy
I do some of the things I value or enjoy with my time but not enough
I don’t do anything I value or enjoy with my time

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

I have as much control over my daily life as I want
I have some control over my daily life but not enough
I have no control over my daily life

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?

I look after myself
Sometimes I can’t look after myself well enough
I feel I am neglecting myself

Thinking about your personal safety, which of the statements best describes your present situation?
By ‘personal safety’ we mean feeling safe from fear of abuse, being attacked or other physical harm.

I have no worries about my personal safety
I have some worries about my personal safety
I am extremely worried about my personal safety

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

I have as much social contact as I want with people I like
I have some social contact with people but not enough
I have little social contact with people and feel socially isolated

Thinking about encouragement and support in your caring role, which of the following statements best describes your present situation?

I feel I have encouragement and support
I feel I have some encouragement and support but not enough
I feel I have no encouragement and support

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.

I don’t have caring responsibilities for anyone else
I always have enough time to care for them
I sometimes have enough time to care for them
I never have enough time to care for them

In the last 12 months, has your health been affected by your caring role in any of the ways listed below?

Please tick all that apply:
Feeling tired
Feeling depressed
Loss of appetite
Disturbed sleep
General feeling of stress
Physical strain (e.g. back)
Short tempered/ irritable
Had to see own GP
Developed my own health conditions
Made an existing condition worse
Other
No, none of these

In the last 12 months, has caring caused you any financial difficulties?

No, not at all
Yes, to some extent
Yes, a lot

In the last 12 months, have you found it easy or difficult to find information and advice about support, services or benefits? Please include information and advice from different sources, such as voluntary organisations and private agencies as well as Social Services.

I have not tried to find information or advice in the last 12 months
Very easy to find
Fairly easy to find
Fairly difficult to find
Very difficult to find

If you found it difficult to find information and advice, please tell us why and what we can do to make it easier for you.

[The “please tell us why” box is optional. Responses obtained should not be returned to NHS Digital]

Open response question

In the last 12 months, how helpful has the information and advice you have received been? Please include information and advice from different organisations, such as voluntary organisations and private agencies as well as Social Services.

I have not received any information or advice in the last 12 months
Very helpful
Quite helpful
Quite unhelpful
Very unhelpful

If you found the information and advice you received unhelpful, please tell us why and what we can do to make it more helpful for you

[The “please tell us why” box is optional. Responses obtained should not be returned to NHS Digital]

Open response question

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?

There have been no discussions that I am aware of, in the last 12 months
I always felt involved or consulted
I usually felt involved or consulted
I sometimes felt involved or consulted
I never felt involved or consulted

In addition to your caring role, please tell us which of the following also applies to you?

Please tick all that apply:
Retired
Employed full-time
Employed part-time (working 30 hours or less)
Self-employed full-time
Self-employed part-time
Not in paid work
Doing voluntary work
Other

How old is the person you care for?

Age in years
(If you don’t know the exact age, please give an approximate one – the person cared for should be aged 18 or over)