Catalogue of Social Care Data

Do you have any long-standing illness, disability or infirmity – by long-standing I mean anything that has troubled you over a period of time or that is likely to affect you over a period of time?

Yes
No

ASK ALL WITH A LONG-STANDING ILLNESS, DISABILITY OR INFIRMITY
Does this illness or disability (Do any of these illnesses or disabilities) limit your activities in any way?

Yes
No

Has your ability to take up, or stay in, EMPLOYMENT been affected by the assistance you give to (NAME OF PERSON(S) CARED FOR) in any of the ways on this card? (FOR ALL RESPONSES, THESE SHOULD BE AS A RESULT OF THE CARING AND NOT FOR OTHER REASONS. IF CHANGED JOB, INCLUDE ALL REASONS FOR THE CHANGE, FOR EXAMPLE, NEW JOB WITH LESS RESPONSIBILITY)

Left employment altogether (due to caring responsibilities)
Took new job
Reduced employment hours
Reduced responsibility at work
Flexible employment agreed
Changed to work at home Other
No, employment not affected because of caring responsibilities

Has your ability to take up, or stay in, EDUCATION been affected by the assistance you give to (NAME OF PERSON(S) CARED FOR) in any of the ways on this card? (FOR ALL RESPONSES, THESE SHOULD BE AS A RESULT OF THE CARING AND NOT FOR OTHER REASONS)

Unable to study (due to caring responsibilities) Reduced study hours
Flexible study time agreed .
Changed to study at home Other
No, none of these

Has your ability to spend time doing leisure or social activities been affected by the assistance you give to (NAME OF PERSON(S) CARED FOR) in any of the ways on this card? This includes seeing friends and family, spending time with a spouse or partner. (FOR ALL RESPONSES, THESE SHOULD BE AS A RESULT OF THE CARING AND NOT FOR OTHER REASONS)

Unable to socialise or take part in social or leisure activities at all (due to caring responsibilities).
Reduced time with spouse or partner.
Reduced time with other family members
Reduced time with friends
Difficulties making new friends
Reduced time spent doing sport or physical activity
Reduced time spent doing pastime or hobby Other
None of these

Which of these best describes the special help you provide to …(NAME)?

There is a regular pattern
Regular pattern some minor variation
Irregular pattern – changes from week to week >
Irregular pattern changes from day to day

And do you think that over the next 5 years the amount of time that you spend looking after or helping [NAME] will … ?

Increase significantly
Increase slightly
Remain the same
Decrease slightly
Decrease significantly
Don’t know

ASK IF MAIN CARED FOR PERSON LIVES IN ANOTHER HOUSEHOLD
How far do you travel to look after or help [NAME]?

Short walking distance
Under a mile
Over 1 mile under 5 miles
Over 5 miles under 10 miles
Over 10 miles under 15 miles
Over 15 miles under 20 miles
Over 20 miles

ASK ALL WHO ARE NOT IN EMPLOYMENTAND ARE OF WORKING AGE (
Do you have any interest in taking up paid employment?

Yes, in the near future
Yes, when my caring responsibilities are reduced
No plans to return to work
Don’t know

ASK ALL WHO ARE INTERESTED IN TAKING UP PAID EMPLOYMENT
(You mentioned earlier that you are currently Going to school or college full-time / On a government scheme for employment training / Waiting to take up paid work already obtained / Looking for paid work on a government training scheme / Intending to look for paid work but prevented by temporary sickness or disability)

Would you like to go into a full or part-time job?

Full-time
Part-time
Don’t know

To what extent do you either agree or disagree with the following
statements about potential barriers you might face in taking up paid employment.

Options:
Agree strongly
Tend to agree
Neither agree nor disagree Tend to disagree
Disagree strongly
Don’t know
Not applicable

Statements:
• I cannot work because of my disability or health condition
• I cannot work because of my caring responsibilities.
• I am not sure I would be able to work regularly
• At my age it is unlikely that I would find a suitable job
• I don’t feel confident about working
• I haven’t got enough qualifications and experience to find the right work
• There aren’t enough suitable job opportunities locally
• I’m not sure I would be better off in work than on benefits
• I cannot work because of my childcare responsibilities
• My family/dependent/s don’t want me to work

Were you aware that if you look after or give special help to sick, disabled or elderly people and you have worked for the same employer for at least 26 weeks you are now legally entitled to request flexible working (e.g. flexitime or working from home), and that all employers are required to give consideration to any such requests?

And have you made a request to work flexibly?

For first part of question:
Yes
No
Don’t know

For second part of question:
Yes
No
Don’t know

In which of these ways do you occupy this accommodation?

Own outright
Buying it with the help of a mortgage or loan
Pay part rent and part mortgage (shared ownership)
Rent it
Live here rent-free (including rent-free in relative’s/friend’s property; excluding squatting).
Squatting

I would like to get some idea of your household’s income. This card
shows various possible sources of income. Can you please tell me which kinds of income your household receives?

Earnings from employment or self-employment .
State retirement pension
Pension from former employer
Personal Pensions
Child Benefit
Job-Seekers Allowance
Pension Credit
Income Support
Working Tax Credit
Child Tax Credit
Housing Benefit
Carers Allowance
Disability Living Allowance/ Attendance Allowance.
Other state benefits .
Interest from savings and investments (e.g. stocks & shares)
Other kinds of regular allowance from outside your household (e.g. maintenance, student’s grants, rent).
No source of income
Don’t know

This card shows incomes in weekly, monthly and annual amounts.
Which of the groups on this card represents your household’s total income from all these sources, before any deductions for income tax, National Insurance, etc? Just tell me the letter beside the row that applies to (you/your joint incomes).

Weekly
H Less than £50
D £51 less than £100
J £100 less than £200
B £200 less than £300
F £300 less than £400
E £400 less than £650
I £650 less than £788
A £788 less than £885
K £885 less than £1,154
G £1,154 less than £1,538
C £1,538 or more

Monthly
Less than £216
£216 less than £433 £433 less than £866 £866 less than £1,300 £1,300 less than £1,733 £1,733 less than £2,816 £2,816 less than £3,417 £3,4167 less than £3,833 £3,833 less than £5,000 £5,000 less than £6,667 £6,667 or more

Annual
Less than £2600
£2600 less than £5200 £5,200 less than £10,400 £10,400 less than £15,600 £15,600 less than £20,800 £20,800 less than £33,800 £33,800 less than £41,000 £41,000 less than £46,000 £46,000 less than £60,000 £60,000 less than £80,000 £80,000 or more

Don’t know
Prefer not to say

Thinking generally, which of the phrases on the card best describes
how your household are getting along financially nowadays?

I/we manage very well
I/we manage quite well
I/we get by alright
I/we have some financial difficulties
I/we have severe financial difficulties
Don’t know
Prefer not to answer

Do you have any of the qualifications listed on this card? Please look
down the whole list before telling me. IF YES: Which of the qualifications on this card do you have? Just tell me the number written beside each one. RECORD ALL THAT APPLY. PROBE: Any others?

Degree/degree level qualification (including higher degree)
Teaching qualification
Nursing qualifications SRN, SCM, SEN, RGN, RM, RHV, Midwife
HNC/HND, BEC/TEC Higher, BTEC Higher/SCOTECH Higher
ONC/OND/BEC/TEC/BTEC not higher
City and Guilds Full Technological Certificate
City and Guilds Advanced/Final Level
City and Guilds Craft/Ordinary Level
A-levels/Higher School Certificate
AS level
SLC/SCE/SUPE at Higher Grade or Certificate of Sixth Year Studies.
O-level passes taken in 1975 or earlier
O-level passes taken after 1975 GRADES A-C
O-level passes taken after 1975 GRADES D-E
GCSE GRADES A-C
GCSE GRADES D-G
CSE GRADE 1/SCE BANDS A-C/Standard Grade LEVEL 1-3
CSE GRADES 2-5/SCE Ordinary BANDS D-E
CSE Ungraded
SLC Lower
SUPE Lower or Ordinary
School Certificate or Matric
NVQ Level 5 .
NVQ Level 4
NVQ Level 3/Advanced level GNVQ
NVQ Level 2/Intermediate level GNVQ
NVQ Level 1/Foundation level GNVQ
Recognised Trade Apprenticeship completed
Clerical or Commercial Qualification (e.g. typing/book-keeping/commerce)
Other (SPECIFY)
No qualifications

How is your health in general; would you say it is…

Very good
Good
Fair
Bad
Very bad

ASK ALL WHO ARE INTERESTED IN TAKING UP PAID EMPLOYMENT
Which of the following things would help you to take up paid employment?

The ability to work from home
Having some flexibility in the hours you want to work
Access to affordable childcare
Access to affordable care for the person you care for
Better public transport
Other (SPECIFY)

And have you ever had a carer’s assessment?

Yes
No

Have you ever been offered a carer’s assessment of your own needs by your local social services or health authority?

Yes
No
Don’t know

The card shows various types of temporary care or holidays which may be available. Are any of these services available if you wanted a break?

Help provided in the home (eg sitting/befriending service)
Help provided in a residential setting (volunteer family/adult placement, residential/nursing home or hospital)
Holiday together
SPONTANEOUS – None of these available/possible
SPONTANEOUS – Don’t know
Other

In the last year, have you made use of a befriending service for …… (DEPNAME) (that’s where a volunteer takes him/her out for the day?)

Yes
No
Not available /DK about service

In the last year, have you made use of a sitting service for …. (NAME OF PERSON CARED FOR) in order to go out for a couple of hours?

Yes
No
Not available /DK about service

If you wanted to go out for a couple of hours (during the time when you usually look after ….. (NAME OF PERSON CARED FOR), would someone else have to look after him/her?

Yes, someone else needed
No, could be left alone

What sort of arrangements did you use for ….. (NAME OF PERSON CARED FOR) when you last had a break for 2 days or more?

Nursing or residential home
NHS hospital
Local authority hostel
Arranged holiday (cared for person only)
Arranged holiday (cared for person and carer)
Stay with a volunteer family.
Stay with relatives or friends .
Friend or relative staying with cared for person .
Other (SPECIFY)

About how many years is it since you last had a break for 2 days or longer?

Number of years

About how long is it since you last had a break for 2 days or longer? Was it less than or more than 1 year ago?

IF LESS THAN I YEAR AGO
About how many months is it since you last had a break for 2 days or longer?

Less than 1 year ago
1 year or more ago

For second part of question:
Number of months

When you had your assessment, did social services take into account your wish to pursue any leisure interests as well as care for someone?

Yes
No
Not applicable

Have you had a review of your own needs by your local social services or health authority in the last year?

Yes
No

Has your own health been affected by the care you provide in any of the ways on this card? (FOR ALL RESPONSES, THESE SHOULD BE AS A RESULT OF THE CARING AND NOT FOR OTHER REASONS)

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 condition
Made an existing condition worse
Other
No, none of these

If we were to define “quality of life” as how you feel overall about your life, including your standard of living, your surroundings, friendships and how you feel day-to- day, how would you rate your quality of life?

Very good
Fairly good
Neither good nor bad
Fairly bad
Very bad
(Don’t know)

Have your personal relationships, social life or leisure been affected by the assistance you give to (NAME OF PERSON BEING CARED FOR)?

In what way have you been affected?

Yes
No

Too tired to go out
Less time for leisure activities
Unable to go on holiday
Providing care has affected my own health
I am more aware of disabled people’s needs
Other (SPECIFY)

Why did you start looking after or giving special help to [NAME]?

No one else available
I was willing / I wanted to help out
I had the time because I was not working
I had the time because I was working part time
I have particular skills / ability to care
Social Services ( local Authority ) suggested I should provide care
It was expected of me (It’s what families do)
He/she wouldn’t want anyone else caring for them
Cared for person requested my help/care
I took over caring responsibilities from someone else
Other (SPECIFY)

How useful was the [NAME OF SERVICE]?

Very useful
Fairly useful
Not very useful
Not at all useful
Don’t know

When you had your assessment, did social services take into account your wish to study . do a course as well as care for someone?

Yes
No
Not applicable

When you had your assessment, did social services take into account your wish to do paid work as well as care for someone?

Yes
No
Not applicable

Did you receive any services or help as a result of the assessment or review?

No Services .
Information about the condition of the person you care for
Information about other organisation providing services
Information on support to remain in paid work or return to paid work
Information about benefits
Information about support group
Break in own home.
Break away from home
Information about direct payments
Assessment of the person you care for
Services for the cared for person .
Equipment (e.g. mobility aids) .
Received a direct payment
Other

Have you ever been offered a review of your own needs by your local social services or health authority?

Yes
No
Don’t know

Have you had a break for 2 days or more since you started to look after …….. (NAME OF PERSON CARED FOR)?

Yes
No

Does the carer give financial help only?

Yes
No

About how long do you spend EACH WEEK looking after or helping (NAME OF PERSON CARED FOR) – that is doing the things you’ve mentioned and including time when you just need to be there (apart from when you are asleep/ including time travelling to and from his/her home)?

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

About how long have you been looking after or helping (NAME OF PERSON CARED FOR) IF PERSON CARED FOR IS IN HOUSEHOLD (that is doing things for him/her over and above what you would normally do for someone living with you/a child of that age)?

Less than 6 months
6 months, less than 1 year
1 year, less than 3 years
3 years, less than 5 years
5 years, less than 10 years
10 years, less than 15 years
15 years, less than 20 years
20 years or more

Apart from any professional people, such as nurses or care workers (i.e. home help), who may regularly visit (NAME OF PERSON CARED FOR), is there anyone else who also looks after him/her – for example, another member of your household, another member of the family, a relative or friend?

Yes
No
Other person(s) spend equal time
Don’t know

Can I just check, do any of these people (including anyone in your household) spend more time looking after (NAME OF PERSON CARED FOR) than you do?

Yes
No
Other person(s) spend equal time
Don’t know

If more than one person is cared for (excluding clients of a voluntary organisation) (TotDep>1), others Q39
May I check; thinking about the total time you spend assisting (SPECIFY ALL PERSONS CARED FOR), about how long altogether do you spend each WEEK looking after or helping them?

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

You mentioned earlier that you spend a similar amount of time per week looking after or helping (NAME ALL ‘EQUAL’ PERSONS CARED FOR) Can you say which one you spend most time helping on average, or is there no difference?

IF RESPONDENT SAYS NO DIFFERENCE SELECT THE FIRST ELIGIBLE PERSON CARED FOR

Does (NAME OF PERSON CARED FOR) receive regular visits at least once a month from any of these people?

Does (NAME OF PERSON CARED FOR) have regular contact, at least once a month from any of these [other] people? Please think about face-to- face contact where (NAME OF PERSON CARED FOR) visits any of these people.

Doctor
Community/district nurse / Community Matron
Health visitor
Social worker/care manager
Home help/care worker
Meals on wheels.
Voluntary worker
Occupational therapist
Educational Professional
Specialist / nursing care / palliative care.
Community mental health services
Other professional visitor.
No, none
Don’t know

Same selection for second part of question.

What are the reasons for (NAME OF PERSON CARED FOR) not receiving regular visits at least once a month from any of the above? Please choose your answers from the card. CODE ALL THAT APPLY

Not available/not offered
Not needed
Tried, but not helpful.
Not wanted by you.
Not wanted by the person you care for
Not at a convenient time
Too expensive.
Not eligible.
Don’t know who to ask
Other

Thinking about the places that [NAME] goes to, about how many hours a week in total does he/she usually spend without you and outside the home?

IF VARIES ASK FOR AVERAGE NUMBER OF HOURS PER MONTH AND CALCULATE AVERAGE NUMBER PER WEEK IF HOURS VARY AND CANNOT GIVE AVERAGE

Does (NAME OF PERSON CARED FOR) regularly go to any of the places or activities listed on this card?

Work
Day centre
School or college.
Day hospital.
Social club, support group or other club
None of these

The card shows various types of temporary care or holidays which may be available in some parts of the country. Are any of these services available if you wanted a break for a couple of days?

Help provided in the home (eg sitting)
Nursing or residential home
NHS hospital
Holiday for person cared for.
Holiday together
Stay with a volunteer family
None of these

Who could you rely on to look after him/her? CODE ALL THAT APPLY

Relative
Friend or neighbour
Paid helper (professional or voluntary)
Other

Is there anyone whom you could rely on to look after him/ her either at home or elsewhere?

Yes
No

You’ve told me about the things you do for …. (NAME OF PERSON CARED FOR). If you wanted a break for a couple of days (during the time when you usually look after him/her), would someone else have to look after him/ her?

Yes, need someone else.
No

And what are the reasons that (NAME OF PERSON CARED FOR) does not make use of a community or voluntary transport scheme? Please choose your answers from the card.

Not available/not offered
Not needed
Tried, but not helpful.
Not wanted by you.
Not wanted by the person you care for
Not at a convenient time
Too expensive.
No need for it
Prefer to use own transport
Prefer to use other transport
Unaware of any schemes in this area
Other
Don’t know

Does (NAME OF PERSON CARED FOR) regularly make use of a community or voluntary transport scheme?

Yes
No
Don’t know

What are the reasons that (NAME OF PERSON CARED FOR) does not go to any outside activities ?

Not available/not offered
Not needed
Tried, but not helpful.
Not wanted by you.
Not wanted by the person you care for
Not at a convenient time
Too expensive.
Not eligible.
Don’t know who to ask
Other

IF PERSON CARED FOR REGULARLY GOES TO WORK
About how many of these hours a week does [NAME] usually spend at work?

IF VARIES ASK FOR AVERAGE NUMBER OF HOURS PER MONTH AND CALCULATE AVERAGE NUMBER PER WEEK
IF HOURS VARY AND CANNOT GIVE AVERAGE

Can I just ask one question, is there anyone, (either living with you) or not living with you who is sick, disabled or elderly whom you look after or give special help to, other than in a professional capacity?

Yes
No
Refused

May I check, is there anyone living with you who is sick, disabled or elderly whom you look
after or give special help to, other than in a professional capacity (for example, a sick or disabled (or elderly) relative/husband/wife/child/friend/parent, etc)?

Yes
No
Refused

And does anyone else in your household aged 16 or older look after or give special help to someone who is sick, disabled or elderly in this household?

Yes
No
Refused

Is there anyone not living with you who is sick, disabled or elderly whom you look after or
give special help to, other than in a professional capacity, (for example, a sick or disabled (or elderly) relative/husband/wife/child/friend/parent, etc)?

Yes, in another hosuehold
No
Don’t know

And does anyone else in your household aged 16 or older look after or give special help to someone not living with you who is sick, disabled or elderly?

Yes, in another hosuehold
No
Don’t know

May I check, is there anyone living with you who is sick, disabled or elderly whom you look after or give special help to, other than in a professional capacity (for example, a sick or disabled (or elderly) relative/husband/ wife/child/friend/parent, etc)?

Yes
No
Not sure

Is there anyone, not living with you who is sick, disabled or elderly whom you look after or give special help to, other than in a professional capacity, (for example, a sick or disabled (or elderly) relative/husband/wife/child/friend/parent, etc)?

Yes, in another hosuehold
No
Not sure

Do you look after or help one sick, disabled or elderly person living with you, or is it more than one?

IF MORE THAN 6 CODE AS 6

Do you look after or help one sick, disabled or elderly person living elsewhere, or is it more than one?

IF MORE THAN 6 CODE AS 6

Who is it (in your household/ not living with you) that you look after or help?

Spouse/partner
Own/adopted/step child
Foster child
Parent
Parent-in-law
Grand-parent
Other relative
Friend or neighbour
Client of voluntary organisation
Other

Age of (NAME OF PERSON CARED FOR)

Age

Sex of person cared for

Male
Female

May I check, does (NAME OF PERSON CARED FOR) usually live in a hospital, residential or nursing home?

Yes
No

May I just check, does (NAME OF PERSON CARED FOR) usually live here all the time or does he/she sometimes go to live somewhere else?

Lives here all the time
Sometimes lives somewhere else

Where does (NAME OF PERSON CARED FOR) live when he/she is not living with you? Is it in another household or somewhere else?

In another private household
Boarding school/residential college
Residential home
Nursing or care home
Hospital
Other institution
Other

May I check, why does (NAME OF PERSON CARED FOR) need care? Just call out the letters that apply.

B Dementia
G A physical disability
D Sight or hearing loss
A A mental health problem
F A learning disability or difficulty
C Long-standing illness
E Terminal illness
H Alcohol or drug dependency
I Other
Problems connected to ageing (SPONTANEOUS ONLY)

Could I just check, how is [NAME OF PERSON CARED FOR] affected?

1 Physically >Q30
2 Mentally >Q30
3 Both physically and mentally >Q30
4 SPONTANEOUS ONLY – Old age >Q30
5 Other >Q30

Is the condition/illness/disability permanent or temporary?

Permanent
Temporary

What kinds of things do you usually do for (NAME OF PERSON CARED FOR)? IF IS IN HOUSEHOLD (over and above what you would normally do for someone living with you/a child of his/her age?)

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

And how often do you help [NAME OF PERSON CARED FOR] with … ?

Personal care? Physical help? Helping with dealing with care services and benefits?
Helping with other paperwork or financial matters? Other practical help?
Keeping him/her company? Taking him/her out?
Giving medicines? Keeping an eye on
him/her to see he/she is all right

For all of the above subjects participants rate with the following:

More than once a day
Once a day
Most days
2-3 times a week
Once a week
Less than once a week, but at least once a month
Less often