Catalogue of Social Care Data

How much do you contribute in user charges for your Personal Budget? Is that amount per week or per month?

RECORD AMOUNT £:
1 Per week
2 Per month

“In addition to your user charges,”] do you pay to top up your Personal Budget at all? This might be to pay for a more expensive option than the council has allowed for, or to pay for more care than the council suggested.

1 Yes
2 No

How much do you pay per week or per month to top up your Personal Budget?
Is that amount per week or per month?

RECORD AMOUNT £:
1 Per week
2 Per month

Do you receive any care paid for by the council or the Local Authority?

1 Yes
2 No

Do you know how much the local authority pays for your care, per week or per month?

RECORD AMOUNT £:
OR RECORD: Don’t know

1 Per week
2 Per month

Thinking about the things listed on this card, [ [{IF LACare=1} “Apart from any care paid for by the local authority,] Do you pay for any care privately at the moment?

CARD DESCRIPTION
Include care for things such as:
• Getting in and out of bed on your own
• Washing your face and hands
• Having a bath or a shower, including getting in and out of the bath or shower
• Dressing or undressing, including putting on shoes and socks
• Using the toilet
• Eating, including cutting up food
• Taking the right amount of medicine at the right times
• Getting around indoors
• Getting up and down stairs
• Getting out of the house
• Shopping for food
• Doing routine housework or laundry
• Doing paperwork or paying bills

1 Yes
2 No

How much do you pay for the care you purchase privately?

Is that amount per week or per month?

RECORD AMOUNT £:
1 Per week
2 Per month

Now I’d like to ask you about all the hours of unpaid care that you receive from the people on this card.

1 Husband / Wife / Partner
2 Son (incl. stepson, adopted son or son-in-law
3 Daughter (incl. stepdaughter, adopted daughter or daughter-in-law)
4 Grandchild (incl. great-grandchild)
5 Brother / Sister (incl. step / adopted / in-laws)
6 Niece / Nephew
7 Mother or Father (incl. mother-in-law or father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

First of all, I’d like you to think about anyone who lives here with you. In a typical week, how many hours of unpaid care do you receive from others living here?

RECORD NO. OF HOURS. ‘IF NONE, ENTER ‘0’

And in a typical week, how many hours of unpaid care do you receive from people who do not live in the same household as you?

RECORD NO. OF HOURS. ‘IF NONE, ENTER ‘0’

In the last month, have you regularly had your main meals provided for you? EXPLAIN IF NECESSARY: Provided by someone who is not living here with you? INTERVIEWER: Don’t count meals eaten elsewhere.

1 Yes
2 No

Who provided your meals?
INTERVIEWER EXPLAIN IF NECESSARY: Meals on Wheels may be provided by the council or another organization

1 Meals on Wheels
2 Private frozen meal provider such as Wiltshire farm foods
3 Family/friend/neighbour brought me ready prepared meals
4 Other
5 None of these

In the last month did you attend a lunch club run by the council or a voluntary body?

1 Used in the last month
2 Not used in the last month

And in the last month did you attend a Day Centre? Please include groups or classes run by a day centre but not necessarily held at the day centre building.

1 Used in the last month
2 Not used in the last month

Can I just check, do you or any of your household receive any of these listed on this card? Please only think about people aged 16+ in your household. Just tell me the number beside the rows that best appl

1 Attendance Allowance
2 Disability Living Allowance– care component
3 Disability Living Allowance – mobility component
4 Personal Independence Payment – daily living component
5 Personal Independence Payment – mobility component
6 None of these

SHOW CARD C1
Thinking about getting in and out of bed on your own, please look at this card and tell me the option which best applies to you? Just tell me the number beside the row that best applies. INTERVIEWER: Do not include help from special aids or equipment such as wheelchairs or stair lifts.

Still looking at Showcard C1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Response scale for all ADLs/IADLs listed:
1 I can do this without help from anyone
2 I have difficulty doing this but manage on my own
3 I can only do this with help from someone
4 I cannot do this

Do you receive this help with because of long standing physical or mental ill- health, a disability or problems relating to old age?

1 Yes for some or all
2 No, none of this help is because long standing physical or mental ill-health, disability or
problems relating to old age

In the last month, who has helped you with (insert list of tasks in group)?
First, please tell me about all of the people from this list who have helped you? Please only think about help received because of long-term physical or mental ill-health, disability or problems relating to old age.

1 Husband/Wife/Partner
2 Son (including step son, adopted son or son in law)
3 Daughter (including step daughter, adopted daughter or daughter in law)
4 Grandchild (including Great Grandchildren)
5 Brother / Sister (including step / adopted / in laws)
6 Niece / Nephew
7 Mother /father (including mother-in-law/ father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

Now, please tell me about all of the people from this list who have helped you with (insert list of tasks in group) in the last month?

Who was the other person that helped you?

Part 1:
1 Home care worker /home help/personal assistant
2 A member of the reablement / intermediate care staff team
3 Occupational Therapist / Physiotherapist
4 Voluntary helper
5 Warden / Sheltered housing manager
6 Cleaner
7 Council’s handyman
8 Other (please specify)
9 None of the above

Part 2:
Text: Maximum 100 characters

You’ve told me that your helped you. Can I just check, does this person live in this household?

1 Yes
2 No

INTERVIEWER CODE OR ASK SEX OF PERSON WHO HELPS

1 Male
2 Female

You have told me that a home care worker/home help/personal assistant helped you in the last month. Do you have just one person helping you, or do you have more than one?

1 One
2 More than one

Do they all help with the same kinds of things, or do you have different people helping with different things?

1 All help with same kind of things
2 Different people help with different things

I’d like you to think about the home care workers, home helps or personal assistants who help with different things, so that I can ask you about each of them later. Thinking of the first home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Thinking of the second home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Are there any more home care workers, home helps or personal assistants who help you with different kinds of things?

1 Yes
2 No

Thinking of the third home care worker/ home help/ personal assistant, what sort of thing do they help you with? CODE MAIN TASK

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Thinking about , in the last week how many hours have they helped you in person with these kinds of tasks?
(If person who cares for respondent lives in the household)
Please only think about the hours they were helping you with these kinds of tasks and not about the time they were around in the house or there to help you if you needed it]
[Add in alternate years] IF MORE THAN ONE PERSON IN CATEGORY (EG 2 DAUGHTERS), ASK ABOUT THE ONE THAT HELPS FOR THE MOST HOURS

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet or doing occasional errands or odd jobs without the respondent

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

How many hours does help you in a usual week?

1 Less than one hour
2 1-4 hours
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

Can you tell me whether in the last week your helped you in person with these tasks for:…

1 Less than 20 hours
2 20-34 hours
3 Or for 35 hours or more?

How long have you been receiving any of the kinds of help we have been talking about? Would you say it is for less than a year, or one year or more?

1 Less than one year
2 One year or more

Has the council or local authority made an assessment or review of your care needs in the last 12 months?

1 Yes
2 No

This card describes a personal budget that your local authority may have allocated for you. Have you been given one of these?

Personal budget – When the local authority finds that you are eligible for support for your social care needs, your personal budget is the amount they calculate is needed to meet these. This might cover the full cost of your social care or part of it.

1 Yes
2 No

What is the value of your [Personal budget] per week or per month?

RECORD AMOUNT £:
1 Per week
2 Per month

Are you taking any of your Personal Budget as a Direct Payment? IF YES, PROBE: Is that all or your Personal Budget or part of it?

CARD DESCRIPTION
Direct Payments where the council gives you a payment to meet some or all of your social care needs. You can then choose how to spend the money. (This should not be confused with benefits paid directly into a bank account which may also be called direct payments.)

1 Yes, all of personal budget as a Direct Payment
2 Yes, part of personal budget as Direct Payment
3 No, none of personal budget as direct payment
4 SPONTANEOUS: Not being paid my personal budget yet.

Have you seen your GP because your health has been affected by the support you give to the people that you care for?

1 Yes
2 No

Has your ability to take up or stay in employment been affected, in any of the ways listed on this card, by the help or support that you give to [the people you care for]?

1 Left employment altogether
2 Took new job
3 Worked fewer hours
4 Reduced responsibility at work
5 Flexible employment agreed
6 Changed to work at home
7 Other
8 Employment not affected

Have the Local Authority (council) carried out a carer’s assessment as a result of the help or support that you provide to your (name of person respondent helps) you care for?

1 Yes
2 No

Have the Local Authority (council) carried out a carer’s assessment as a result of the help or support that you provide to the people you care for?

1 Yes
2 No

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

1. Yes, this person pays me from their own income, pensions or savings
2. Yes, this person pays me from a personal budget or direct payment
3. Yes, I receive a carer’s allowance
4. Yes, I receive money in another way
5. No, I receive no money for helping this person.

And does the local authority, council or social services pay your (relevant provider) directly or is it through your Direct Payment or a Personal Budget?

1 Local authority/social services or council pay directly
2 Paid through Direct Payments / Personal or Individual Budgets

How much money is [person who helps] paid from the direct payment or personal budget for helping you?

Enter amount in pounds and pence on this screen Range: 0…20,000.
1. Per hour
2. Per visit
3. Per day
4. Per week
5. Per fortnight
6. Per four weeks
7. Per calendar month
8. Per year

You have told me that no payment was made for [person who helps] helping you. Why was this?

1. They provided their help for free/there is no charge for the service
2. Sometimes I give them money or gifts for the help they give me’
3. Other

In the last month, have you regularly had your main meals provided for you?
EXPLAIN IF NECESSARY: Provided by someone who is not living here with you?
INTERVIEWER: Don’t count meals eaten elsewhere.

1 Yes
2 No

Who provided your meals? PROBE: Who else?
INTERVIEWER EXPLAIN IF NECESSARY: Meals on Wheels may be provided by the council or another organization.

1 Meals on Wheels
2 Private frozen meal provider such as Wiltshire farm foods
3 Family/friend/ neighbour brought me ready prepared meals
4 Other
5 None of these

In the last month did you attend a lunch club run by the council or a voluntary body?

1 Used in the last month
2 Not used in the last month

And in the last month did you attend a Day Centre? Please include groups or classes run by a day centre but not necessarily held at the day centre building.

1 Used in the last month
2 Not used in the last month

Have you personally provided help or support to anyone in the last month because they have long-term physical or mental ill-health, a disability or problems relating to old age? Do not include help given in a professional capacity or as part of a job, but include help or support given to your family, friends or neighbours

Can I just check, are you only including help or support that you give this person/these people because they have long-term physical or mental ill-health, disability or problems relating to old age, or were you thinking about help more generally?

How many people do you provide this kind of help and support to?

Part 1:
1 Yes
2 No

Part 2:
1 Yes, thinking of help/support given because of health/old age
2 No, thinking about help more generally

Part 3:
Range: 0..97

Thinking about (name of person respondent helps), what is their relationship to you?

1 Husband/Wife/Partner
2 Mother (including mother-in-law)
3 Father (including father-in-law)
4 Son (including step son, adopted son or son in law)
5 Daughter (including step daughter, adopted daughter or daughter in law)
6 Grandparent
7 Grandchild (including Great Grandchildren)
8 Brother / Sister (including step / adopted / in laws)
9 Other family member
10 Friend
11 Neighbour
12 Somebody I help as a professional carer
13 Somebody I help as a voluntary helper
14 Other (PLEASE SPECIFY)

Does (name of person respondent helps) live in the same household as you or in a different household?

1 Same household
2 Different household

How old is (name of person respondent helps)?

Range: 1..130

Is (name of person respondent helps) male or female?

1 Male
2 Female

Thinking only about the types of tasks and activities I showed you on card G12 how many hours did you spend helping (name of person respondent helps) in the last week?

[Unable to find card G12]

Thinking of the same type of help you give (name of person respondent helps) can you tell me whether in the last week you helped him/her:

Part 1:
1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

Part 2:
1 Less than 10 hours
2 10-19 hours
3 20-34 hours
4 Or for 35 hours or more?

How many hours do you help (name of person respondent helps) in a usual week?

Repeated for each person respondent helps.

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

Thinking about the total time you spend providing support or help to [insert name of person(s) cared for], about how many hours altogether did you spend last week helping them?

1 Less than one hour per week
2 1-4 hour
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

Which of the activities do you help or support (name of person respondent helps)? Please think only of help or support given because of long-term physical or mental ill health, disability or problems relating to old age.

1 Getting the person in and out of bed
2 Washing their face and hands
3 Having a bath or a shower, including getting in and out of the bath or shower
4 Dressing or undressing, including putting on shoes and socks
5 Using the toilet
6 Eating, including cutting up food
7 Taking the right amount of medicine at the right times
8 Getting around indoors (please don’t include using the stairs)
9 Getting up and down stairs
10 Getting out of the house, for example to go to the doctors or to visit a friend
11 Shopping for food, including getting to the shops, choosing the items, carrying the items
home and then unpacking and putting the items away
12 Doing routine housework or laundry
13 Doing paperwork or paying bills

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

INTERVIEWER: RECORD AMOUNT GIVEN BY RESPONDENT (pounds and pence) and
reference period.

Part 1:
1. Yes, this person pays me from their own income, pensions or savings
2. Yes, this person pays me from a personal budget or direct payment
3. Yes, I receive a carer’s allowance
4. Yes, I receive money in another way
5. No, I receive no money for helping this person.

Part 2:
Enter amount in pounds and pence on this screen.
1. per hour
2. per visit
3. per day
4. per week
5. per fortnight
6. per four weeks
7. per calendar month
8. per year

Do you receive any of these types of support in caring for (name of person respondent helps)?
Please think only about help or support given directly to you.

1 Help from GP or nurse
2 Access to respite care
3 Help from professional care staff
4 Help from carers’ organisation or charity
5 Help from other family members
6 Advice from local authority/ social services
7 Help from friends/neighbours
8 None of these

In the last three months, has your own health been affected, in any of the ways listed on this card, by the help or support that you give to your (name of person respondent helps)?

1 Feeling tired
2 Feeling depressed
3 Loss of appetite
4 Disturbed sleep
5 General feeling of stress
6 Physical strain
7 Short tempered
8 Developed my own health condition
9 Made an existing condition worse
10 Other
11 No, none of these

Have you seen your GP because your health has been affected by the support you give to your {relation from PRel}?

1 Yes
2 No

Thinking about (person who helps), in the last week how many hours have they helped you in person with these kinds of tasks?

ENTER NUMBER OF HOURS. IF LESS THAN 1HOUR ENTER 0.5.

Thinking about (helper’s role/name), in the last week how many hours have they helped you in person with these kinds of tasks?

Tasks:
1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Can you tell me whether in the last week your (helper’s name) helped you in person with these tasks for:….

Part 1:
IF 2 PEOPLE HELP AT THE SAME TIME, CODE DOUBLE THE HOURS
1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

Part 2:
1 Less than 20 hours
2 20-34 hours
3 Or for 35 hours or more?

How long have you been receiving any of the kinds of help we have been talking about? Would you say it is for less than a year, or one year or more?

– Home care worker/ home help/ personal assistant
– Reablement/ intermediate care staff
– Occupational therapist/ physiotherapist
– Voluntary helper
– Warden / Sheltered housing manager
– Cleaner
– Council’s handyman
– Other professional carer
– Husband/ wife/ partner [other informal helper]

1. Less than one year
2. One year or more

Do you usually deal with paying for your care or does a family member or friend manage this for you?

1. Respondent deals with this all him/herself
2. Respondent knows about some of it but not all
3. Respondent does not deal with this at all

Local authorities/council/social services offer different ways of arranging payment for people’s care. This card describes some of these ways. Please look at the card and tell me whether either
of these apply for the care you receive? Only include payments for social care. Do not include other payments for example, pension or Attendance Allowance

1 Direct payments
2 Local authority/ council/ social services manages the money
3 Neither of these

Do you have a Personal Budget, sometimes known as an Individual Budget? This is when the local authority/ council/social services decides the amount or pot of money necessary to meet your social care needs. You can choose how to spend this money which can be used for a range of services, not just social care.

1 Yes, have Personal Budget/Individual Budget
2 No, do not have Personal Budget/ Individual Budget

Has the council or local authority made an assessment of what you can afford for any of your care needs? This is sometimes called an income assessment or means testing

1 Yes, had income assessment
2 No

How was the help from your (name of formal care provider) arranged? Please look at this card and tell me which option applies.

1 Arranged without involvement from the local authority, council or social services
2 Local authority, council or social services arranged this help for me
3 Local authority, council or social services told me about the help but I arranged it myself or my family arranged it for me
4 Other

Do you (your husband/partner, wife/partner if appropriate) pay or give any money for the help given by your (list of relevant formal providers)? Please include any payments made for this care, even if not made directly to the care provider.

1 Yes
2 No
3 (don’t know)

How much money do you pay for the help given by [list of all formal providers who help]. Please include any payments made for this care, even if not made directly to the care provider?

Does this payment cover all the cost of this help or some of the cost of this help?

Part 1:
Enter amount in pounds and pence on this screen Range: 0…20,000.
1. per hour
2. per visit
3. per day
4. per week
5. per fortnight
6. per four weeks
7. per calendar month
8. per year

Part 2:
1 All
2 Some

How do you usually pay or give money to your (list of relevant formal providers) for helping you?

1 My own personal income, savings, pension or benefit (such as Attendance
Allowance)
2 My Direct Payment/ Personal or Individual Budget from the Local Authority/
council/ Social Services
3 From another source

(And in addition to what you pay), as far as you are aware does anyone else or any organisation pay or give money to your (list of relevant formal providers) for the care you receive – for example the council or a family member? Do not count any benefits such as Carers Allowance or Attendance Allowance.

1 Yes, the local authority /council / social services
2 Yes, a family member (with their own money)
3 Yes, other
4 No, nobody else pays

And does the local authority, council or social services pay your (list of relevant formal providers) directly or is it through your Direct Payment or a Personal Budget?

1 Local authority / social services or council pay directly
2 Paid through Direct Payments / Personal or Individual Budgets

How much money is [list of all formal providers who help] paid from the direct payment or personal budget for helping you?

Enter amount in pounds and pence on this screen: Range: 0…20,000.
1. Per hour
2. Per visit
3. Per day
4. Per week
5. Per fortnight
6. Per four weeks
7. Per calendar month
8. Per year

You have told me that no payment was made for [list of all formal providers who help] helping you. Why was this?

1. They provided their help for free/there is no charge for the service
2. Sometimes I give them money or gifts for the help they give me
3. Other

Do you (your husband/partner, wife/partner if appropriate) pay or give any money for the help given by your (relevant provider)? Please include any payments made for this care, even if not made directly to the care provider.

1 Yes
2 No
3 (Don’t know)

How much money do you pay for the help given by [person who helps]? Please include any payments made for this care, even if not made directly to the care provider.

INTERVIEWER: Record amount given by respondent (pounds and pence) and reference period.
Enter amount in pounds and pence on this screen. Enter reference period on next screen.
1. Per hour
2. Per visit
3. Per day
4. Per week
5. Per fortnight
6. Per four weeks
7. Per calendar month
8. Per year

Does this payment [payments made by participant] cover all the cost of this help or some of the cost of this help?

1 All
2 Some

How do you usually pay or give money to your (relevant provider) for helping you?

1 my own personal income, savings, pension or benefit (such as Attendance Allowance)
2 my Direct Payment/ Personal or Individual Budget from the Local Authority/ council/Social Services
3 from another source

(And in addition to what you pay), as far as you are aware does anyone else or any organisation pay or give money to your (relevant provider) for the care you receive – for example the council or a family member? Do not count any benefits such as Carers Allowance or Attendance Allowance.

1 Yes, the local authority /council / social services
2 Yes, a family member (with their own money)
3 Yes, other
4 No, nobody else pays

In the last month, have you regularly had your main meals provided for you?
EXPLAIN IF NECESSARY: Provided by someone who is not living here with you?
INTERVIEWER: Don’t count meals eaten elsewhere.

Who provided your meals? PROBE: Who else?
INTERVIEWER EXPLAIN IF NECESSARY: Meals on Wheels may be provided by the council or another organisation

Part 1:
1 Yes
2 No

Part 2:
1 Meals on Wheels
2 Private frozen meal provider such as Wiltshire farm foods
3 Family/friend/neighbour brought me ready prepared meals
4 Other
5 None of these

In the last month did you attend a lunch club run by the council or a voluntary body?

1 Used in the last month
2 Not used in the last month

And in the last month did you attend a Day Centre? Please include groups or classes run by a day centre but not necessarily held at the day centre building.

1 Used in the last month
2 Not used in the last month

In the last 12 months, have you and a health professional agreed a Personal Care Plan for your overall health and social care needs?

IF YES: Is that in the last 12 months or more than 12 months ago?
1 Yes, have agreed a personal care plan in the last 12 months
2 Yes, agreed a personal care plan more than 12 months ago
3 No, do not have a personal plan

Have you talked about a Personal Care Plan with a health care professional, or been offered a Personal Care Plan in the last 12 months?

1 Yes
2 No

Why have you not agreed a Personal Care Plan after discussing it? Is that because you didn’t want one or is there some other reason?

1 Did not want a personal care plan
2 Still discussing a plan, not yet agreed
95 Other reason – SPECIFY

Would you like the opportunity to discuss a Personal Care Plan with a health professional?

1 Yes
2 No
3 Don’t know

Has your Care Plan improved the health or social care services you receive?
IF YES: Would you say they have improved a great deal or to some extent?

1 Yes – improved a great deal
2 Yes – improved to some extent
3 No – not improved
4 Don’t know / can’t say

There are various options for self-care support that health care professionals may offer to people with long term health conditions. This card shows some of them. Have you discussed or been offered any of the things on this card in the last 12 months (even if you decided not to take them up)?

1 Being given help to find information about your condition
2 Being given help to find information about the choices you have for care from health professionals
3 Attending a training course on your condition, such as the Expert Patients Programme, Challenging Arthritis, DAFNE for diabetes, etc.
4 Joining a support network or attending a group for people with a long-term condition
5 Having equipment fitted into your home
6 Other (PLEASE SPECIFY)
7 None of these

And over the last 12 months which, if any, of the things on this card have you actually done to help manage your condition? Just read out the numbers that apply.

1 Read and used information about your condition (include using the internet)
2 Read and used information about the choices you have for care from health professionals
(include using the internet)
3 Attended a training course on your condition such as the Expert Patients Programme,
Challenging Arthritis, DAFNE for diabetes, etc.
4 Joined a support network or attended a group for people with a long-term condition
5 Had equipment fitted into your home
6 Other (PLEASE SPECIFY)
7 None of these

Thinking about getting in and out of bed on your own, please look at this card and tell me the option which best applies to you?

Still looking at Showcard G1, what about…
(B) washing your face and hands/
(C) having a bath or a shower, including getting in and out of the bath or shower/
(D) dressing or undressing, including putting on shoes and socks/
(E) using the toilet/
(F) eating, including cutting up food/
(G) taking the right amount medicine at the right times/
(H) getting around indoors/
(I) getting up and down stairs/
(J) getting out of the house, for example to go to the doctors or visit a friend/
(K) shopping for food including getting to the shops, choosing the items, carrying the items
home and then unpacking and putting the items away/
(L) doing routine housework or laundry/
(M)doing paperwork or paying bills

1 I can do this without help from anyone
2 I have difficulty doing this but manage on my own
3 I can only do this with help from someone
4 I cannot do this

Have you received help from anyone with getting in out of bed on your own, in the last month?

What about (insert shortened task B to M listed in bold)?

(B) washing your face and hands/
(C) having a bath or a shower, including getting in and out of the bath or shower/
(D) dressing or undressing, including putting on shoes and socks/
(E) using the toilet/
(F) eating, including cutting up food/
(G) taking the right amount medicine at the right times/
(H) getting around indoors/
(I) getting up and down stairs/
(J) getting out of the house, for example to go to the doctors or visit a friend/
(K) shopping for food including getting to the shops, choosing the items, carrying the items
home and then unpacking and putting the items away/
(L) doing routine housework or laundry/
(M)doing paperwork or paying bills

1 Yes
2 No

Do you receive this help with (insert tasks K/L/M) because of long standing physical or mental ill health, a disability or problems relating to old age?

(K) shopping for food including getting to the shops, choosing the items, carrying the items
home and then unpacking and putting the items away/
(L) doing routine housework or laundry/
(M)doing paperwork or paying bills

1 Yes for some or all
2 No, none of this help is because long standing physical or mental ill-health, disability or problems relating to old age

In the last month, who has helped you with (insert list of tasks in group in bold)?
First, please tell me about all of the people from this list who have helped you. Please only think about help received because of long term physical or mental ill-health, disability or problems relating to old age.

For HelpInf and HelpForm, tasks A to M regrouped into following categories:
1. Having a bath or shower
2. Getting in and out of bed ,washing your face and hands , dressing or undressing, using the
toilet, eating, including cutting up food, taking medication, getting around indoors and using stairs
3. Getting out of the house, shopping for food, doing routine housework or laundry, doing
paperwork or paying bills

CODE ALL THAT APPLY:
1 Husband/Wife/Partner
2 Son (including step son, adopted son or son in law)
3 Daughter (including step daughter, adopted daughter or daughter in law)
4 Grandchild (including Great Grandchildren)
5 Brother / Sister (including step / adopted / in laws)
6 Niece / Nephew
7 Mother /father (including mother-in-law/ father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

Now, please tell me about all of the people from this list who have helped you with (insert list of tasks in group) in the last month?

Who was the other person that helped you?

You have told me that your (person who helped) helped you. Can I just check, does this person live in this household?

Sex of carer:

Part 1:
CODE ALL THAT APPLY.
1 Home care worker / Home help / Personal assistant
2 A member of the re-ablement / intermediate care staff team
3 Occupational Therapist / Physiotherapist
4 Voluntary helper
5 Warden / Sheltered housing manager
6 Cleaner
7 Council’s handyman
8 Other (please specify)
9 None of the above

Part 2:
Text: Maximum 100 characters

Part 3:
1 Yes
2 No

Part 4:
1 Male
2 Female

You have told me that a home care worker/home help/personal assistant helped you in the last month. Do you have just one person helping you, or do you have more than one?

Do they all help with the same kinds of things, or do you have different people helping with different things?

Part 1:
1 One
2 More than one

Part 2:
1 All help with same kind of things
2 Different people help with different things

I’d like you to think about the home care workers, home helps or personal assistants who help with different things, so that I can ask you about each of them later. Thinking of the first home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/ personal care
4 Meals/ eating
5 Getting out of the house/ shopping
6 Cleaning/ laundry
7 Other

Thinking of the second home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Are there any more home care workers, home helps or personal assistants who help you with different kinds of things?

1 Yes
2 No

Thinking of the third home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/ personal care
4 Meals/ eating
5 Getting out of the house/ shopping
6 Cleaning/ laundry
7 Other

Have you personally provided help or support to anyone in the last month because they have long term physical or mental ill-health, a disability or problems relating to old age? Do not include help given in a professional capacity or as part of a job, but include help or support given to your family, friends or neighbours.
INTERVIEWER: Include help for wife/husband/partner

Can I just check, are you only including help or support that you give this person/these people because they have long-term physical or mental ill-health, disability or problems relating to old age, or were you thinking about help more generally?

How many people do you provide this kind of help and support to?

Part 1:
1 Yes
2 No

Part 2:
1 Yes, thinking of help/support given because of health/old age
2 No, was thinking about help more generally

Part 3:
Range: 0..97

Thinking about (name of person respondent helps), what is their relationship to you?

Please specify the other relationship.

Part 1:
1 Husband/Wife/Partner
2 Mother (including mother-in-law)
3 Father (including father-in-law)
4 Son (including step son, adopted son or son in law)
5 Daughter (including step daughter, adopted daughter or daughter in law)
6 Grandparent
7 Grandchild (including Great Grandchildren)
8 Brother / Sister (including step / adopted / in laws)
9 Other family member
10 Friend
11 Neighbour
12 Somebody I help as a professional carer
13 Somebody I help as a voluntary helper
14 Other (PLEASE SPECIFY)

Part 2:
Text: Maximum 50 characters

Does (name of person respondent helps) live in the same household as you or in a different
household?

1 Same household
2 Different household

How old is (name of person respondent helps)?

INTERVIEWER: If necessary ask respondent to estimate.
Range: 1..130

Is (name of person respondent helps) male or female?

1 Male
2 Female

Thinking only about the types of tasks and activities I showed you on Showcard E10, how many hours did you spend helping (name of person respondent helps) in the last week?

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet, or doing occasional errands or odd jobs without the respondent

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

If PrHours= don’t know or refusal THEN
PrHoursB

1 Less than 10 hours
2 10-19 hours
3 20-34 hours
4 Or, for 35 hours or more?

How many hours do you help (name of person respondent helps) in a usual week?

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

Thinking about the total time you spend providing support or help to [text fill (if also some younger) the older people that you care for], [name of person cared for], about how many hours altogether did you spend last week helping them?

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet, or doing occasional errands/odd jobs without the respondent

Number of hours

Thinking about the total time you spend providing support or help to [text fill (if also some younger) the older people that you care for], [name of person cared for], about how many hours altogether did you spend last week helping them?

1 Less than one hour per week
2 1-4 hour
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

And looking at card F13, which of the activities do you help or support (name of person respondent helps)? Please think only of help or support given because of long-term physical or mental ill-health, disability or problems relating to old age.

CODE ALL THAT APPLY
1 Getting the person in and out of bed
2 Washing their face and hands
3 Having a bath or a shower, including getting in and out of the bath or shower
4 Dressing or undressing, including putting on shoes and socks
5 Using the toilet
6 Eating, including cutting up food

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

How much do you receive per week or per month?

Is that per week or per month?

Part 1:
1 Yes, this person pays me from their own income, pensions or savings
2 Yes, this person pays me from a personal budget or direct payment
3 Yes, I receive a carer’s allowance
4 Yes, I receive money in another way
5 No, I receive no money for helping this person.

Part 2:
Amount

Part 3:
1 Per week
2 Per month

Do you receive any of these types of support in caring for (name of person respondent helps)? Please think only about help or support given directly to you

1 Help from GP or nurse
2 Access to respite care
3 Help from professional care staff
4 Help from carers’ organisation or charity
5 Help from other family members

In the last three months, has your own health been affected, in any of the ways listed on this card, by the help or support that you give to the people you care for?

1 Feeling tired
2 Feeling depressed
3 Loss of appetite
4 Disturbed sleep
5 General feeling of stress
6 Physical strain
7 Short tempered
8 Developed my own health condition
9 Made an existing condition worse
10 Other
11 No, none of these

Have you seen your GP because your health has been affected by the support you give to the people that you care for?

1 Yes
2 No

Has your ability to take up or stay in employment been affected, in any of the ways listed on this card, by the help or support that you give to the people you care for?

1 Left employment altogether
2 Took new job
3 Worked fewer hours
4 Reduced responsibility at work
5 Flexible employment agreed

Have the Local Authority (council) carried out a carer’s assessment as a result of the help or support that you provide to the people you care
for?

1 Yes
2 No

You have told me that a home care worker/home help/personal assistant helped you in the last month. Do you have just one person helping you, or do you have more than one?

Do they all help with the same kinds of things, or do you have different people helping with different things?

Part 1:
1 One
2 More than one

Part 2:
1 All help with same kind of things
2 Different people help with different things

I’d like you to think about the home care workers, home helps or personal assistants who help with different things, so that I can ask you about each of them later. Thinking of the first home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Thinking of the second home care worker/ home help/ personal assistant, what sort of thing do they help you with?

1 Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Are there any more home care workers, home helps or personal assistants who help you with different kinds of things?

Thinking of the third home care worker/ home help/ personal assistant, what sort of thing do they help you with? CODE MAIN TASK

Part 1:
1 Yes
2 No

Part 2:
Getting up in the morning
2 Going to bed
3 Washing/ bathing/personal care
4 Meals/ eating
5 Getting out of the house/shopping
6 Cleaning/ laundry
7 Other

Thinking about getting in and out of bed on your own, please look at this card and tell me the option which best applies to you?

[Repeat for tasks B to M]
TasksB-TasksM
Still looking at Showcard E1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home
and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Response scale for all data items:
1 I can do this without help from anyone
2 I have difficulty doing this but manage on my own
3 I can only do this with help from someone
4 I cannot do this

Have you received help from anyone with getting in out of bed on your own, in the last month? : Include help even if it was for a short time or provided by husband/ wife/ another family member

What about (insert shortened task B to M listed in bold)?
TasksB-TasksM
Still looking at Showcard E1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home
and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Do you receive this help with (insert tasks K/L/M) because of long standing physical or mental ill health, a disability or problems relating to old age?

Part 1. Response scale for all data items:
1 Yes
2 No

Part 2:
1 Yes for some or all
2 No, none of this help is because long standing physical or mental ill-health, disability or
problems relating to old age

In the last month, who has helped you with (insert list of tasks in group)?
First, please tell me about all of the people from this list who have helped you? Please only think about help received because of long-term physical or mental ill-health, disability or problems relating to old age.

1 Husband/Wife/Partner
2 Son (including step son, adopted son or son in law)
3 Daughter (including step daughter, adopted daughter or daughter in law)
4 Grandchild (including Great Grandchildren)
5 Brother / Sister (including step / adopted / in laws)
6 Niece / Nephew
7 Mother /father (including mother-in-law/ father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

Now, please tell me about all of the people from this list who have helped you with (insert list of tasks in group) in the last month?

Who was the other person that helped you?

Part 1:
1 Home care worker /home help/personal assistant
2 A member of the reablement / intermediate care staff team
3 Occupational Therapist / Physiotherapist
4 Voluntary helper
5 Warden / Sheltered housing manager
6 Cleaner
7 Council’s handyman
8 Other (please specify)
9 None of the above

Part 2:
Text: Maximum 100 characters

You’ve told me that your (person who helped) helped you. Can I just check, does this person live in
this household?

1 Yes
2 No

Thinking about [person who helps], in the last week how many hours have they helped you in person with these kinds of tasks?

INTERVIEWER INSTRUCTION: If Home care worker/ Personal Assistant or other care staff ‘live in’/’sleep in’, INCLUDE ALL hours they are on duty]
1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

F HelpHours = don’t know or refusal THEN
HelpHourB

Can you tell me whether in the last week your (helper’s name) helped you in person with these tasks for:….READ OUT….

1 Less than 20 hours
2 20-34 hours
3 Or for 35 hours or more?

How long have you been receiving any of the kinds of help we have been talking about? Would you
say it is for less than a year, or one year or more?

1 Less than one year
2 One year or more

How many hours does (helper’s name/role) help you in a usual week?

1 Less than one hour
2 1-4 hours
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

Has the council or local authority made an assessment or review of your care needs in the last 12
months?

1 Yes
2 No

This card describes a personal budget that your local authority may have allocated for you. Have you been given one of these?

CARD DESCRIPTIONS
Personal budget – When the local authority finds that you are eligible for support for your social care needs, your personal budget is the amount they calculate is needed to meet these. This might cover the full cost of your social care or part of it.

1 Yes
2 No

What is the value of your [Personal budget] per week or per month?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:

Part 2:
1 Per week
2 Per month

Are you taking any of your Personal Budget as a Direct Payment?

CARD DESCRIPTION
Direct Payments where the council gives you a payment to meet some or all of your social care needs. You can then choose how to spend the money. (This should not be confused with benefits paid directly into a bank account which may also be called direct payments.)

IF YES, PROBE: Is that all or your Personal Budget or part of it?
1 Yes, all of personal budget as a Direct Payment
2 Yes, part of personal budget as Direct Payment
3 No, none of personal budget as direct payment
4 SPONTANEOUS: Not being paid my personal budget yet.

How much do you contribute in user charges for your Personal Budget?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:
OR CODE 0.00 for ‘None’

Part 2:
1 Per week
2 Per month

“In addition to your user charges,”] do you pay to top up your Personal Budget at all? This might be to pay for a more expensive option than the council has allowed for, or to pay for more care than the council suggested.

How much do you pay per week or per month to top up your Personal Budget?

Is that amount per week or per month?

Part 1:
1 Yes
2 No

Part 2:
RECORD AMOUNT £:

Part 3:
1 Per week
2 Per month

Do you receive any care paid for by the council or the Local Authority?

1 Yes
2 No

Do you know how much the local authority pays for your care, per week or per month?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:
OR RECORD: Don’t know

Part 2:
1 Per week
2 Per month

“Apart from any care paid for by the local authority,] Do you pay for any care privately at the moment?

1 Yes
2 No

How much do you pay for the care you purchase privately?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:

Part 2:
1 Per week
2 Per month

First of all, I’d like you to think about anyone who lives here with you. In a typical week, how many hours of unpaid care do you receive from others living here?

RECORD NO. OF HOURS OR CODE:
1 None

And in a typical week, how many hours of unpaid care do you receive from people who do not live in
the same household as you?

RECORD NO. OF HOURS OR CODE:
1 None

Thinking about the total time you spend providing support or help to [text fill (if also some younger) the older people that you care for], [name of person cared for], about how many hours altogether did you spend last week helping them?

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet, or doing occasional errands/odd jobs without the respondent

Number of hours

Thinking about the total time you spend providing support or help to [text fill (if also some younger) the older people that you care for], [name of person cared for], about how many hours altogether did you spend last week helping them?

1 Less than one hour per week
2 1-4 hour
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

And looking at card F13 [see response scale], which of the activities do you help or support (name of person respondent helps)? Please think only of help or support given because of long-term physical or mental ill-health, disability or problems relating to old age.

CODE ALL THAT APPLY
1 Getting the person in and out of bed
2 Washing their face and hands
3 Having a bath or a shower, including getting in and out of the bath or shower
4 Dressing or undressing, including putting on shoes and socks
5 Using the toilet
6 Eating, including cutting up food

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

How much do you receive per week or per month?

Is that per week or per month?

Part 1:
1 Yes, this person pays me from their own income, pensions or savings
2 Yes, this person pays me from a personal budget or direct payment
3 Yes, I receive a carer’s allowance
4 Yes, I receive money in another way
5 No, I receive no money for helping this person.

Part 2:
Amount

Part 3:
1 Per week
2 Per month

Do you receive any of these types of support in caring for (name of person respondent helps)? Please think only about help or support given directly to you

1 Help from GP or nurse
2 Access to respite care
3 Help from professional care staff
4 Help from carers’ organisation or charity
5 Help from other family members

In the last three months, has your own health been affected, in any of the ways listed on this card, by the help or support that you give to the people you care for?

1 Feeling tired
2 Feeling depressed
3 Loss of appetite
4 Disturbed sleep
5 General feeling of stress
6 Physical strain
7 Short tempered
8 Developed my own health condition
9 Made an existing condition worse
10 Other
11 No, none of these

Have you seen your GP because your health has been affected by the support you give to the people that you care for?

1 Yes
2 No

Has your ability to take up or stay in employment been affected, in any of the ways listed on this card, by the help or support that you give to the people you care for?

1 Left employment altogether
2 Took new job
3 Worked fewer hours
4 Reduced responsibility at work
5 Flexible employment agreed

Have the Local Authority (council) carried out a carer’s assessment as a result of the help or support that you provide to the people you care
for?

1 Yes
2 No

I’d like to ask you about any care and help you may have given this person [end of life care]. First I’m going to ask about personal care like the things listed at the top of on this card. Then I’m going to ask about other general help, like the things listed at the bottom of the card.

SHOW CARD XX
Personal care examples:
Help with washing
Help with dressing
Help with going to the toilet
Help with eating
Other help with physical needs
General help examples:
Keeping company / visiting
Running errands
Doing laundry
Shopping
Giving lifts
Helping with money or legal issues Taking to appointments or out for recreation

Did you provide personal care to this person, like those listed at the top of this card?

1 Yes
2 No

Thinking about the time when you were providing personal care [end of life care], how long was this for?

1 A week or less
2 More than a week, up to a month
3 More than a month, up to 3 months
4 More than 3 months, up to 6 months
5 More than 6 months, up to 9 months
6 More than 9 months, up to a year
7 More than a year, up to two years
8 More than two years, up to five years
9 More than five years

Thinking about the last year of care in general, how often did you provide personal care [to end of life person]?

1 Every day
2 At least once a week
3 At least once a month
4 Less than once a month
5 SPONTANEOUS: It varied too much to say

Still thinking about the last year of care} in general what time of
day did you provide personal care? Please tell me all that apply.

1 Morning
2 Afternoon
3 Evening
4 Night
5 SPONTANEOUS: It varied too much to say

Roughly how long did you spend giving personal care [to end of life individual] each morning?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long did you spend giving personal care [to end of life individual] during the afternoon?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long hours did you spend giving personal care [to end of life individual] during the evening?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long did you spend giving personal care [to end of life individual] during the night?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long did you spend giving personal care [to end of life individual] on those occasions?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Did you look after or give other general help to them [person at end of life] like the things listed at the bottom of this card?

Personal care examples:
Help with washing
Help with dressing
Help with going to the toilet
Help with eating
Other help with physical needs
General help examples:
Keeping company / visiting
Running errands
Doing laundry
Shopping
Giving lifts
Helping with money or legal issues
Taking to appointments or out for recreation
Other help or support

Thinking about the time when you were providing general help like this, how long was this for?

Roughly,} how many days in total did you help like this?

Still thinking about the last year of providing help in general what time of day did you provide this kind of help?
Please tell me all that apply.

Roughly how long did you spend providing help like this during the morning?
Roughly how long did you spend providing help like this during the afternoon?
Roughly how long did you spend providing help like this during the evening?
Roughly how long did you spend providing help like this during the night?

Roughly how long did you spend providing help like this on those occasions?

Part 1:
1 Yes
2 No

Part 2:
1 A week or less
2 More than a week, up to a month
3 More than a month, up to 3 months
4 More than 3 months, up to 6 months
5 More than 6 months, up to 9 months
6 More than 9 months, up to a year
7 More than a year, up to two years
8 More than two years, up to five years
9 More than five years

Part 3:
1 Every day
2 At least once a week
3 At least once a month
4 Less than once a month
5 SPONTANEOUS: It varied too much to say

Part 4:
Numeric answer

Part 5:
1 Morning
2 Afternoon
3 Evening
4 Night
5 SPONTANEOUS: It varied too much to say

Part 6-9:
INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Part 10:
INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

1 Yes, this person pays me from their own income, pensions or savings
2 Yes, this person pays me from a personal budget or direct payment
3 Yes, I receive a carer’s allowance
4 Yes, I receive money in another way
5 No, I receive no money for helping this person.

How many hours does (helper’s name/role) help you in a usual week?

1 Less than one hour
2 1-4 hours
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

Has the council or local authority made an assessment or review of your care needs in the last 12 months?

1 Yes
2 No

This card describes a personal budget that your local authority may have allocated for you. Have you been given one of these?

CARD DESCRIPTIONS
Personal budget – When the local authority finds that you are eligible for support for your social care needs, your personal budget is the amount they calculate is needed to meet these. This might cover the full cost of your social care or part of it.

1 Yes
2 No

What is the value of your [Personal budget] per week or per month?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:

Part 2:
1 Per week
2 Per month

Are you taking any of your Personal Budget as a Direct Payment?

CARD DESCRIPTION
Direct Payments where the council gives you a payment to meet some or all of your social care needs. You can then choose how to spend the money. (This should not be confused with benefits paid directly into a bank account which may also be called direct payments.)

IF YES, PROBE: Is that all or your Personal Budget or part of it?
1 Yes, all of personal budget as a Direct Payment
2 Yes, part of personal budget as Direct Payment
3 No, none of personal budget as direct payment
4 SPONTANEOUS: Not being paid my personal budget yet.

How much do you contribute in user charges for your Personal Budget?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:
OR CODE 0.00 for ‘None’

Part 2:
1 Per week
2 Per month

“In addition to your user charges,”] do you pay to top up your Personal Budget at all? This might be to pay for a more expensive option than the council has allowed for, or to pay for more care than the council suggested.

How much do you pay per week or per month to top up your Personal Budget?

Is that amount per week or per month?

Part 1:
1 Yes
2 No

Part 2:
RECORD AMOUNT £:

Part 3:
1 Per week
2 Per month

Do you receive any care paid for by the council or the Local Authority?

1 Yes
2 No

Do you know how much the local authority pays for your care, per week or per month?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:
OR RECORD: Don’t know

Part 2:
1 Per week
2 Per month

“Apart from any care paid for by the local authority,] Do you pay for any care privately at the moment?

1 Yes
2 No

How much do you pay for the care you purchase privately?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:

Part 2:
1 Per week
2 Per month

First of all, I’d like you to think about anyone who lives here with you. In a typical week, how many hours of unpaid care do you receive from others living here?

RECORD NO. OF HOURS OR CODE:
1 None

And in a typical week, how many hours of unpaid care do you receive from people who do not live in the same household as you?

RECORD NO. OF HOURS OR CODE:
1 None

Have you personally provided help or support to anyone in the last month because they have long term physical or mental ill-health, a disability or problems relating to old age? Do not include help given in a professional capacity or as part of a job, but include help or support given to your family, friends or neighbours.
INTERVIEWER: Include help for wife/husband/partner

Can I just check, are you only including help or support that you give this person/these people because they have long-term physical or mental ill-health, disability or problems relating to old age, or were you thinking about help more generally?

How many people do you provide this kind of help and support to?

Part 1:
1 Yes
2 No

Part 2:
1 Yes, thinking of help/support given because of health/old age
2 No, was thinking about help more generally

Part 3:
Range: 0..97

Thinking about (name of person respondent helps), what is their relationship to you?

Please specify the other relationship.

Part 1:
1 Husband/Wife/Partner
2 Mother (including mother-in-law)
3 Father (including father-in-law)
4 Son (including step son, adopted son or son in law)
5 Daughter (including step daughter, adopted daughter or daughter in law)
6 Grandparent
7 Grandchild (including Great Grandchildren)
8 Brother / Sister (including step / adopted / in laws)
9 Other family member
10 Friend
11 Neighbour
12 Somebody I help as a professional carer
13 Somebody I help as a voluntary helper
14 Other (PLEASE SPECIFY)

Part 2:
Text: Maximum 50 characters

Does (name of person respondent helps) live in the same household as you or in a different household?

1 Same household
2 Different household

How old is (name of person respondent helps)?

INTERVIEWER: If necessary ask respondent to estimate.
Range: 1..130

Is (name of person respondent helps) male or female?

1 Male
2 Female

Thinking only about the types of tasks and activities I showed you on Showcard E10, how many hours did you spend helping (name of person respondent helps) in the last week?

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet, or doing occasional errands or odd jobs without the respondent

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

If PrHours= don’t know or refusal THEN
PrHoursB

1 Less than 10 hours
2 10-19 hours
3 20-34 hours
4 Or, for 35 hours or more?

How many hours do you help (name of person respondent helps) in a usual week?

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

Thinking about the time when you were providing personal care [end of life care], how long was this for?

1 A week or less
2 More than a week, up to a month
3 More than a month, up to 3 months
4 More than 3 months, up to 6 months
5 More than 6 months, up to 9 months
6 More than 9 months, up to a year
7 More than a year, up to two years
8 More than two years, up to five years
9 More than five years

Thinking about the last year of care in general, how often did you provide personal care [to end of life person]?

1 Every day
2 At least once a week
3 At least once a month
4 Less than once a month
5 SPONTANEOUS: It varied too much to say

Still thinking about the last year of care} in general what time of
day did you provide personal care? Please tell me all that apply.

“1 Morning
2 Afternoon
3 Evening
4 Night
5 SPONTANEOUS: It varied too much to say”

Roughly how long did you spend giving personal care [to end of life individual] each morning?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long did you spend giving personal care [to end of life individual] during the afternoon?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long hours did you spend giving personal care [to end of life individual] during the evening?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long did you spend giving personal care [to end of life individual] during the night?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Roughly how long did you spend giving personal care [to end of life individual] on those occasions?

INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

“Did you look after or give other general help to them [person at end of life] like the things listed at the bottom of this card?

Personal care examples:
Help with washing
Help with dressing
Help with going to the toilet
Help with eating
Other help with physical needs
General help examples:
Keeping company / visiting
Running errands
Doing laundry
Shopping
Giving lifts
Helping with money or legal issues
Taking to appointments or out for recreation
Other help or support

Thinking about the time when you were providing general help like this, how long was this for?

Roughly,} how many days in total did you help like this?

Still thinking about the last year of providing help in general what time of day did you provide this kind of help?
Please tell me all that apply.

Roughly how long did you spend providing help like this during the morning?
Roughly how long did you spend providing help like this during the afternoon?
Roughly how long did you spend providing help like this during the evening?
Roughly how long did you spend providing help like this during the night?

Roughly how long did you spend providing help like this on those occasions?”

Part 1:
1 Yes
2 No

Part 2:
1 A week or less
2 More than a week, up to a month
3 More than a month, up to 3 months
4 More than 3 months, up to 6 months
5 More than 6 months, up to 9 months
6 More than 9 months, up to a year
7 More than a year, up to two years
8 More than two years, up to five years
9 More than five years

Part 3:
1 Every day
2 At least once a week
3 At least once a month
4 Less than once a month
5 SPONTANEOUS: It varied too much to say

Part 4:
Numeric answer

Part 5:
1 Morning
2 Afternoon
3 Evening
4 Night
5 SPONTANEOUS: It varied too much to say

Part 6-9:
INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Part 10:
INTERVIEWER: ROUND TO NEAREST NUMBER OF HOURS.

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

1 Yes, this person pays me from their own income, pensions or savings
2 Yes, this person pays me from a personal budget or direct payment
3 Yes, I receive a carer’s allowance
4 Yes, I receive money in another way
5 No, I receive no money for helping this person.

Can I just check, do you or any of your household receive any of these listed on this card? Please only
think about people aged 16+ in your household.

Please could you tell me who receives these allowances in your household?

Now looking at this card, which of these rates is {^name of HH member selected at AttDisab} currently
receiving? Just tell me the number beside the row that best apply

Part 1:
1 Attendance Allowance
2 Disability Living Allowance– care component
3 Disability Living Allowance – mobility component
4 Personal Independence Payment – daily living component
5 Personal Independence Payment – mobility component
6 None of these

Part 2:
List people from household grid aged 16+

Part 3:
Attendance Allowance
1 Higher rate for attendance during day AND night – £83.10
2 Lower rate for day OR night – £55.65
Disability Living Allowance (DLA) – Care Component
3 Highest rate – £83.10
4 Middle rate – £55.65
5 Lowest rate – £22.00
Disability Living Allowance (DLA) – Mobility Component
6 Highest rate – £58.00
7 Lower rate – £22.00
Personal Independence Payments (PIP) – Daily Living Component
8 Enhanced rate – £83.10
9 Standard rate – £55.65
Personal Independence Payments (PIP) – Mobility Component
10 Enhanced rate – £58.00
11 Standard rate – £22.00

Are you prevented from working or looking for work by any of the things listed on this card?

1 Own disability or illness
2 Caring for a disabled or elderly person
3 Looking after child(ren)
4 No work available
5 Better off not working
6 Pregnant
7 Don’t need employment
8 Retired
9 (None of these)

Thinking about getting in and out of bed on your own, please look at this card and tell me the option which best applies to you?

[Repeat for tasks B to M]
TasksB-TasksM
Still looking at Showcard E1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home
and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Response scale for all data items:
1 I can do this without help from anyone
2 I have difficulty doing this but manage on my own
3 I can only do this with help from someone
4 I cannot do this

Have you received help from anyone with getting in out of bed on your own, in the last month? : Include help even if it was for a short time or provided by husband/ wife/ another family member

What about (insert shortened task B to M listed in bold)?
TasksB-TasksM
Still looking at Showcard E1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home
and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Do you receive this help with (insert tasks K/L/M) because of long standing physical or mental ill health, a disability or problems relating to old age?

Part 1. Response scale for all data items:
1 Yes
2 No

Part 2:
1 Yes for some or all
2 No, none of this help is because long standing physical or mental ill-health, disability or
problems relating to old age

In the last month, who has helped you with (insert list of tasks in group)?
First, please tell me about all of the people from this list who have helped you? Please only think about help received because of long-term physical or mental ill-health, disability or problems relating to old age.

1 Husband/Wife/Partner
2 Son (including step son, adopted son or son in law)
3 Daughter (including step daughter, adopted daughter or daughter in law)
4 Grandchild (including Great Grandchildren)
5 Brother / Sister (including step / adopted / in laws)
6 Niece / Nephew
7 Mother /father (including mother-in-law/ father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

Now, please tell me about all of the people from this list who have helped you with (insert list of tasks in group) in the last month?

Who was the other person that helped you?

Part 1:
1 Home care worker /home help/personal assistant
2 A member of the reablement / intermediate care staff team
3 Occupational Therapist / Physiotherapist
4 Voluntary helper
5 Warden / Sheltered housing manager
6 Cleaner
7 Council’s handyman
8 Other (please specify)
9 None of the above

Part 2:
Text: Maximum 100 characters

You’ve told me that your (person who helped) helped you. Can I just check, does this person live in
this household?

1 Yes
2 No

Thinking about [person who helps], in the last week how many hours have they helped you in person with these kinds of tasks?

INTERVIEWER INSTRUCTION: If Home care worker/ Personal Assistant or other care staff ‘live in’/’sleep in’, INCLUDE ALL hours they are on duty]
1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

F HelpHours = don’t know or refusal THEN
HelpHourB

Can you tell me whether in the last week your (helper’s name) helped you in person with these tasks for:….READ OUT….

1 Less than 20 hours
2 20-34 hours
3 Or for 35 hours or more?

How long have you been receiving any of the kinds of help we have been talking about? Would you say it is for less than a year, or one year or more?

1 Less than one year
2 One year or more

How much do you pay for the care you purchase privately?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:

Part 2:
1 Per week
2 Per month

First of all, I’d like you to think about anyone who lives here with you. In a typical week, how many hours of unpaid care do you receive from others living here?

RECORD NO. OF HOURS OR CODE:
1 None

And in a typical week, how many hours of unpaid care do you receive from people who do not live in the same household as you?

RECORD NO. OF HOURS OR CODE:
1 None

Have you personally provided help or support to anyone in the last month because they have long term physical or mental ill-health, a disability or problems relating to old age? Do not include help given in a professional capacity or as part of a job, but include help or support given to your family, friends or neighbours.
INTERVIEWER: Include help for wife/husband/partner

Can I just check, are you only including help or support that you give this person/these people because they have long-term physical or mental ill-health, disability or problems relating to old age, or were you thinking about help more generally?

How many people do you provide this kind of help and support to?

Part 1:
1 Yes
2 No

Part 2:
1 Yes, thinking of help/support given because of health/old age
2 No, was thinking about help more generally

Part 3:
Range: 0..97

Thinking about (name of person respondent helps), what is their relationship to you?

Please specify the other relationship.

Part 1:
1 Husband/Wife/Partner
2 Mother (including mother-in-law)
3 Father (including father-in-law)
4 Son (including step son, adopted son or son in law)
5 Daughter (including step daughter, adopted daughter or daughter in law)
6 Grandparent
7 Grandchild (including Great Grandchildren)
8 Brother / Sister (including step / adopted / in laws)
9 Other family member
10 Friend
11 Neighbour
12 Somebody I help as a professional carer
13 Somebody I help as a voluntary helper
14 Other (PLEASE SPECIFY)

Part 2:
Text: Maximum 50 characters

Does (name of person respondent helps) live in the same household as you or in a different household?

1 Same household
2 Different household

How old is (name of person respondent helps)?

INTERVIEWER: If necessary ask respondent to estimate.
Range: 1..130

Is (name of person respondent helps) male or female?

1 Male
2 Female

“Thinking only about the types of tasks and activities I showed you on Showcard E10, how many hours did you spend helping (name of person respondent helps) in the last week?

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet, or doing occasional errands or odd jobs without the respondent”

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

If PrHours= don’t know or refusal THEN
PrHoursB

1 Less than 10 hours
2 10-19 hours
3 20-34 hours
4 Or, for 35 hours or more?

How many hours do you help (name of person respondent helps) in a usual week?

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

“Thinking about the total time you spend providing support or help to [text fill (if also some younger) the older people that you care for], [name of person cared for], about how many hours altogether did you spend last week helping them?

INTERVIEWER EXPLAIN IF NECESSARY: not help over the phone or by internet, or doing occasional errands/odd jobs without the respondent”

Number of hours

Thinking about the total time you spend providing support or help to [text fill (if also some younger) the older people that you care for], [name of person cared for], about how many hours altogether did you spend last week helping them?

1 Less than one hour per week
2 1-4 hour
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

And looking at card F13 [see response scale], which of the activities do you help or support (name of person respondent helps)? Please think only of help or support given because of long-term physical or mental ill-health, disability or problems relating to old age.

CODE ALL THAT APPLY
1 Getting the person in and out of bed
2 Washing their face and hands
3 Having a bath or a shower, including getting in and out of the bath or shower
4 Dressing or undressing, including putting on shoes and socks
5 Using the toilet
6 Eating, including cutting up food

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]?

How much do you receive per week or per month?

Is that per week or per month?

Part 1:
1 Yes, this person pays me from their own income, pensions or savings
2 Yes, this person pays me from a personal budget or direct payment
3 Yes, I receive a carer’s allowance
4 Yes, I receive money in another way
5 No, I receive no money for helping this person.

Part 2:
Amount

Part 3:
1 Per week
2 Per month

Do you receive any of these types of support in caring for (name of person respondent helps)? Please think only about help or support given directly to you

“1 Help from GP or nurse
2 Access to respite care
3 Help from professional care staff
4 Help from carers’ organisation or charity
5 Help from other family members”

In the last three months, has your own health been affected, in any of the ways listed on this card, by the help or support that you give to the people you care for?

1 Feeling tired
2 Feeling depressed
3 Loss of appetite
4 Disturbed sleep
5 General feeling of stress
6 Physical strain
7 Short tempered
8 Developed my own health condition
9 Made an existing condition worse
10 Other
11 No, none of these

Have you seen your GP because your health has been affected by the support you give to the people that you care for?

1 Yes
2 No

Has your ability to take up or stay in employment been affected, in any of the ways listed on this card, by the help or support that you give to the people you care for?

1 Left employment altogether
2 Took new job
3 Worked fewer hours
4 Reduced responsibility at work
5 Flexible employment agreed

Have the Local Authority (council) carried out a carer’s assessment as a result of the help or support that you provide to the people you care
for?

1 Yes
2 No

“I’d like to ask you about any care and help you may have given this person [end of life care]. First I’m going to ask about personal care like the things listed at the top of on this card. Then I’m going to ask about other general help, like the things listed at the bottom of the card.

SHOW CARD XX
Personal care examples:
Help with washing
Help with dressing
Help with going to the toilet
Help with eating
Other help with physical needs
General help examples:
Keeping company / visiting
Running errands
Doing laundry
Shopping
Giving lifts
Helping with money or legal issues Taking to appointments or out for recreation

Did you provide personal care to this person, like those listed at the top of this card? “

1 Yes
2 No

Can I just check, do you or any of your household receive any of these listed on this card? Please only think about people aged 16+ in your household.

1 Attendance Allowance
2 Disability Living Allowance – mobility component
3 Personal Independence Payment – daily living component
4 Personal Independence Payment – mobility component
5 None of these

Now looking at this card, which of these rates is {^name of HH member selected at AttDisab} currently receiving? Just tell me the number beside the row that best apply.

SHOW CARD A6 {Weekly rates from April 2015-April 2017} Attendance Allowance
1 Higher rate for attendance during day AND night – £83.10
2 Lower rate for day OR night – £55.65
Disability Living Allowance (DLA) – Care Component
3 Highest rate – £83.10
4 Middle rate – £55.65
5 Lowest rate – £22.00
Disability Living Allowance (DLA) – Mobility Component
6 Highest rate – £58.00
7 Lower rate – £22.00
Personal Independence Payments (PIP) – Daily Living Component
8 Enhanced rate – £83.10
9 Standard rate – £55.65
Personal Independence Payments (PIP) – Mobility Component
10 Enhanced rate – £58.00 11 Standard rate – £22.00

SHOW CARD A7 {Weekly rates from 2nd April 2018 Attendance Allowance
1 Higher rate for attendance during day AND night – £85.60
2 Lower rate for day OR night – £57.30
Disability Living Allowance (DLA) – Care Component
3 Highest rate – £85.60
4 Middle rate – £57.30
5 Lowest rate – £22.65
Disability Living Allowance (DLA) – Mobility Component
6 Highest rate – £59.75
7 Lower rate – £22.65
Personal Independence Payments (PIP) – Daily Living Component
8 Enhanced rate – £85.60
9 Standard rate – £57.30
Personal Independence Payments (PIP) – Mobility Component
10 Enhanced rate – £59.75 11 Standard rate – £22.60

(A) Thinking about getting in and out of bed on your own, please look at this card and tell me the option which best applies to you?
INTERVIEWER: Do not include help from special aids or equipment such as wheelchairs or stair lifts.

Still looking at Showcard D1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

For all questions (A-M):
1 I can do this without help from anyone
2 I have difficulty doing this but manage on my own
3 I can only do this with help from someone
4 I cannot do this

Have you received help from anyone with getting in out of bed on your own, in the last month? EXPLAIN IF NECESSARY: Include help even if it was for a short time or provided by husband/ wife/ another family member

What about ?
EXPLAIN IF NECESSARY: Include help even if it was for a short time or provided by husband/ wife/ another family member

(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Response scale for all questions:
1 Yes
2 No

Do you receive this help with because of long standing physical or mental ill- health, a disability or problems relating to old age?

1 Yes for some or all
2 No, none of this help is because long standing physical or mental ill-health, disability or
problems relating to old age

I am now going to ask you some questions about who helps you with different things. I will show you two lists of people who may have helped you.

First, please tell me about all of the people from this list who have helped you? Please only think about help received because of long-term physical or mental ill-health, disability or problems relating to old age.

1 Husband/Wife/Partner
2 Son (including step son, adopted son or son in law)
3 Daughter (including step daughter, adopted daughter or daughter in law)
4 Grandchild (including Great Grandchildren)
5 Brother / Sister (including step / adopted / in laws)
6 Niece / Nephew
7 Mother /father (including mother-in-law/ father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

Now, please tell me about all of the people from this list who have helped you with in the last month?

Who was the other person that helped you?

You’ve told me that your (person who helped) helped you. Can I just check, does this person live in this household?

Part 1:
1 Home care worker /home help/personal assistant
2 A member of the reablement / intermediate care staff team
3 Occupational Therapist / Physiotherapist
4 Voluntary helper
5 Warden / Sheltered housing manager
6 Cleaner
7 Council’s handyman
8 Other (please specify)
9 None of the above

Part 2:
Text: Maximum 100 characters

Part 3:
1 Yes
2 No

Thinking about [person who helps], in the last week how many hours have they helped you in person with these kinds of tasks?

Please only think about the hours they were helping you with these kinds of tasks and not about the time they were around in the house or there to help you if you needed it]

ENTER NUMBER OF HOURS AND MINUTES.
IF RESPONDENT DOES NOT GIVE PRECISE ANSWER INTERVIEWER CODE DK
IF 2 PEOPLE HELP AT THE SAME TIME, CODE DOUBLE THE HOURS

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

Can you tell me whether in the last week your helped you in person with these tasks for:

1 Less than 20 hours
2 20-34 hours
3 Or for 35 hours or more?

How long have you been receiving any of the kinds of help we have been talking about? Would you say it is for less than a year, or one year or more?

1 Less than one year
2 One year or more

How many hours does (helper’s name/role) help you in a usual week?

1 Less than one hour
2 1-4 hours
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more

Has the council or local authority made an assessment or review of your care needs in the last 12 months?

1 Yes
2 No

This card describes a personal budget that your local authority may have allocated for you. Have you been given one of these?

CARD DESCRIPTIONS
Personal budget – When the local authority finds that you are eligible for support for your social care needs, your personal budget is the amount they calculate is needed to meet these. This might cover the full cost of your social care or part of it.

1 Yes
2 No

What is the value of your [Personal budget] per week or per month?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:

Part 2:
1 Per week
2 Per month

Are you taking any of your Personal Budget as a Direct Payment?

CARD DESCRIPTION
Direct Payments where the council gives you a payment to meet some or all of your social care needs. You can then choose how to spend the money. (This should not be confused with benefits paid directly into a bank account which may also be called direct payments.)

“How much do you contribute in user charges for your Personal Budget?

Is that amount per week or per month?”

Part 1:
RECORD AMOUNT £:
OR CODE 0.00 for ‘None’

Part 2:
1 Per week
2 Per month

““In addition to your user charges,”] do you pay to top up your Personal Budget at all? This might be to pay for a more expensive option than the council has allowed for, or to pay for more care than the council suggested.

How much do you pay per week or per month to top up your Personal Budget?

Is that amount per week or per month?”

Part 1:
1 Yes
2 No

Part 2:
RECORD AMOUNT £:

Part 3:
1 Per week
2 Per month

Do you receive any care paid for by the council or the Local Authority?

1 Yes
2 No

Do you know how much the local authority pays for your care, per week or per month?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £:
OR RECORD: Don’t know

Part 2:
1 Per week
2 Per month

“Apart from any care paid for by the local authority,] Do you pay for any care privately at the moment?

1 Yes
2 No

In the last three months, has your own health been affected, in any of the ways listed on this card, by the help or support that you give {IF HelpNo=1} =2} ^to the people you care for>.
Please read out the numbers that apply from this card?

Have you seen your GP because your health has been affected by the support you give to {IF HelpNo=1} =2}> the people that you care for?

Part 1:
CODE ALL THAT APPLY
1 Feeling tired
2 Feeling depressed
3 Loss of appetite
4 Disturbed sleep
5 General feeling of stress
6 Physical strain
7 Short tempered
8 Developed my own health condition
9 Made an existing condition worse
10 Other
11 No, none of these

Part 2:
1 Yes
2 No

Has your ability to take up or stay in employment been affected, in any of the ways listed on this card, by the help or support that you give to your {IF HelpNo=1} =2} ^the people you care for>.
Please read out the numbers that apply from this card?

CODE ALL THAT APPLY
1 Left employment altogether
2 Took new job
3 Worked fewer hours
4 Reduced responsibility at work
5 Flexible employment agreed
6 Changed to work at home
7 Other
8 Employment not affected

Have the Local Authority (council) carried out a carer’s assessment as a result of the help or support that you provide {IF HelpNo=1} =2} ^to the people you care for>?

1 Yes
2 No

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?

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

In the last 12 months, has caring caused you any financial difficulties. Please read out the number that applies from this card?

1 No, not at all
2 Yes, to some extent
3 Yes, a lot

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
1 I am not in paid employment because of my caring responsibilities
2 I am not in paid employment for other reasons (e.g. Retired, Student)

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

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

In the last month, which of these tasks have you helped [^name of person cared for] with. Please think only of help or support given because of long-term physical or mental ill-health, disability or problems relating to old age?

A Personal Care (e.g. washing yourself, having a bath or shower)
B Physical help (e.g. to get around indoors, to get up and down stairs)
C Helping with dealing with care services and benefits
D Helping with other paperwork or financial matters
E Other practical help (e.g. shopping for food)
F Keeping him/her company
G Taking him/her out
H Giving medicines
I Keeping an eye on him/her to see he/she is all right
J None of these

How often do you help [^name of person cared for] with [^task selected at WhchHelp]?”

1 More than once a day
2 Once a day
3 Most days
4 2-3 times a week
5 Once a week
6 Less than once a week, but at least once a month
7 Less often

About how long have you been looking after or helping [^name of person cared for]…?

1 Less than 6 months
2 6-12 months
3 1-3 years
4 3-5 years
5 5-10 years
6 10-15 years
7 15-20 years
8 20 years plus

Does <^name of person cared for> receive regular visits at least once a month from any of these people?” CODE ALL THAT APPLY

Does <^name of person cared for> have regular contact from anyone else on this list?

What are the reasons for [^name of person cared for] not receiving regular visits at least once a month from the people listed on the last card?

Part 1 & 2:
1 Doctor
2 Community/district nurse / Community Matron
3 Health visitor
4 Social worker/care manager
5 Home help/care worker
6 Meals on wheels
7 Voluntary worker
8 Occupational therapist
9 Educational Professional
10 Specialist / nursing care / palliative care
11 Community mental health services
12 Gardener / caretaker / warden
13 Other professional visitor
14 No, none (SPONTANEOUS)

Part 3:
CODE ALL THAT APPLY
1 Not available/not offered
2 Not needed
3 Tried, but not helpful
4 Not wanted by you
5 Not wanted by the person you care for
6 Not at a convenient time
7 Too expensive
8 Not eligible
9 Don’t know who to ask
10 Other

Does <^name of cared for person> regularly make use of a community or voluntary transport scheme?

1 Yes
2 No

Why did you start looking after or giving special help to [^name of cared for person]? CODE ALL THAT APPLY

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

What other reasons did you start looking after <^name of cared for person>?

Text: Maximum 250 characters

How, if at all, has your ability to spend time doing leisure or social activities been affected by the assistance you give to [^name of person cared for]…Please read out the numbers that apply from this card?

CODE ALL THAT APPLY
1 Unable to socialise
2 Reduced time with spouse or partner
3 Reduced time with other family members
4 Reduced time with friends
5 Difficulties making new friends
6 Reduced time spent doing sport or physical activity
7 Reduced time spent doing pastime or hobby
8 Other
9 None of these (SPONTANEOUS)

Do you have any interest in taking up paid employment?”

1 Yes, in the near future
2 Yes, when my caring responsibilities are reduced
3 No plans to return to work

Which of the following things would help you take up paid employment?

CODE ALL THAT APPLY
1 The ability to work from home
2 Having some flexibility in the hours you want to work
3 Access to affordable childcare
4 Access to affordable care for the person you care for
5 Better public transport
6 Other

Do you either agree or disagree with the following statements about potential barriers you might face in taking up paid employment…. [Loop for each statement]

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

For all statements:
Agree strongly
Tend to agree
Neither agree nor disagree
Tend to disagree
Disagree strongly
Not applicable (SPONTANEOUS)

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?

1 Yes
2 No

And have you made a request to work flexibly?

1 Yes
2 No

On average how many hours of paid work do you do per week? Please include any paid or unpaid overtime but exclude meal breaks.

RANGE: 1-100

Thinking about the things listed on this card, [ [{IF LACare=1} “Apart from any care paid for by the local authority,] Do you pay for any care privately at the moment?

ON SHOWCARD D8:
Include care for things such as:
• Getting in and out of bed on your own
• Washing your face and hands
• Having a bath or a shower, including getting in and out of the bath or shower
• Dressing or undressing, including putting on shoes and socks
• Using the toilet
• Eating, including cutting up food
• Taking the right amount medicine at the right times
• Getting around indoors
• Getting up and down stairs
• Getting out of the house
• Shopping for food
• Doing routine housework or laundry
• Doing paperwork or paying bills

1 Yes
2 No

How much do you pay for the care you purchase privately?

Is that amount per week or per month?

Part 1:
RECORD AMOUNT £: OR CODE 0.00 for ‘None’

Part 2:
1 Per week
2 Per month

Now I’d like to ask you about all the hours of unpaid care that you receive from the people on this card.

1 Husband / Wife / Partner
2 Son (incl. stepson, adopted son or son-in-law
3 Daughter (incl. stepdaughter, adopted daughter or daughter-in-law)
4 Grandchild (incl. great-grandchild)
5 Brother / Sister (incl. step / adopted / in-laws)
6 Niece / Nephew
7 Mother / Father (incl. mother-in-law or father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

First of all, I’d like you to think about anyone who lives here with you. In a typical week, how many hours of unpaid care do you receive from others living here?

RECORD NO. OF HOURS. ‘IF NONE, ENTER ‘0’

And in a typical week, how many hours of unpaid care do you receive from people who do not live in the same household as you?

RECORD NO. OF HOURS. ‘IF NONE, ENTER ‘0’

Have you personally provided help or support to anyone in the last month because they have long-term physical or mental ill-health, a disability or problems relating to old age? Do not include help given in a professional capacity or as part of a job, but include help or support given to your family, friends or neighbours.
INTERVIEWER: Include help for wife/husband/partner

1 Yes
2 No

Can I just check, are you only including help or support that you give this person/these people because they have long-term physical or mental ill-health, disability or problems relating to old age, or were you thinking about help more generally?

1 Yes, thinking of help/support given because of health/old age
2 No, was thinking about help more generally

How many people do you provide this kind of help and support to?

Range: 0..97

Now I’d like you to think about the three people you provide the most help and support to.

Thinking about (name of person respondent helps), what is their relationship to you?

They are my…
1 Husband/Wife/Partner
2 Mother (including mother-in-law)
3 Father (including father-in-law)
4 Son (including step son, adopted son or son in law)
5 Daughter (including step daughter, adopted daughter or daughter in law)
6 Grandparent
7 Grandchild (including Great Grandchildren)
8 Brother / Sister (including step / adopted / in laws)
9 Other family member
10 Friend
11 Neighbour
12 Somebody I help as a professional carer
13 Somebody I help as a voluntary carer
14 Other (PLEASE SPECIFY)

Does (name of person respondent helps) live in the same household as you or in a different household?

1 Same household
2 Different household

How old is (name of person respondent helps)?

Range: 1..130

Is male or female?

1 Male
2 Female

Thinking only about the types of tasks and activities I showed you on Showcard E3, how many hours did you spend helping (name of person respondent helps) in the last week?

INTERVIEWER EXPLAIN IF NECESSARY: Please exclude travel time

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

Thinking of the same type of help you give can you tell me whether in the last week you helped him/her:

1 Less than 10 hours
2 10-19 hours
3 20-34 hours
4 Or, for 35 hours or more?

How many hours do you help (name of person respondent helps) in a usual week? INTERVIEWER EXPLAIN IF NECESSARY: Please exclude travel time

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

Thinking about the total time you spend providing support or help to , , about how many hours altogether did you spend last week helping them?

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

Thinking about the total time you spend providing support or help to , , about how many hours altogether
did you spend last week helping them?

1 Less than one hour per week
2 1-4 hour per week
3 5-9 hours per week
4 10-19 hours per week
5 20-34 hours per week
6 35-49 hours per week
7 50-99 hours per week
8 100 hours or more per week

And looking at card E5, which of the activities do you help or support ? Please think only of help or support given because of long-term physical or mental ill- health, disability or problems relating to old age.

CODE ALL THAT APPLY
1 Getting the person in and out of bed
2 Washing their face and hands
3 Having a bath or a shower, including getting in and out of the bath or shower
4 Dressing or undressing, including putting on shoes and socks
5 Using the toilet
6 Eating, including cutting up food
7 Taking the right amount of medicine at the right times
8 Getting around indoors (please don’t include using the stairs)
9 Getting up and down stairs
10 Getting out of the house, for example to go to the doctors or to visit a friend
11 Shopping for food, including getting to the shops, choosing the items, carrying the items
home and then unpacking and putting the items away
12 Doing routine housework or laundry
13 Doing paperwork or paying bills

Do you receive any money for helping [your answer at PrRel]/ [answer from PrName1/2/3]? INTERVIEWER DO NOT INCLUDE GIFTS, TREATS OR OCCASIONAL PAYMENTS OF EXPENSES SUCH AS PETROL MONEY OR LUNCH

1 Yes, this person pays me from their own income, pensions or savings
2 Yes, this person pays me from a personal budget or direct payment
3 Yes, I receive a carer’s allowance
4 Yes, I receive money in another way
5 No, I receive no money for helping this person.

How much do you receive per week or per month?

Is that per week or per month?

Part 1:
Enter amount

Part 2:
1 Per week
2 Per month

The next few questions are about the effects on you of caring and about any support you may receive with your care responsibilities

Do you receive any of these types of support in caring for (name of person respondent helps)? Please think only about help or support given directly to you.
Please read out the numbers that apply from this card

CODE ALL THAT APPLY
1 Help from GP or nurse
2 Access to respite care
3 Help from professional care staff
4 Help from carers’ organisation or charity
5 Help from other family members
6 Advice from local authority/ social services
7 Help from friends/neighbours
8 No, I don’t receive any of these

Can I just check, do you or any of your household receive any of these listed on this card? Please only think about people aged 16+ in your household.

1 Attendance Allowance
2 Disability Living Allowance – mobility component
3 Personal Independence Payment – daily living component
4 Personal Independence Payment – mobility component
5 None of these

Now looking at this card, which of these rates is {^name of HH member selected at AttDisab} currently receiving? Just tell me the number beside the row that best apply.

SHOW CARD A6 {Weekly rates from April 2018-April 2019} Attendance Allowance
1 Higher rate for attendance during day AND night – £85.60
2 Lower rate for day OR night – £57.30
Disability Living Allowance (DLA) – Care Component
3 Highest rate – £85.60
4 Middle rate – £57.30
5 Lowest rate – £22.65
Disability Living Allowance (DLA) – Mobility Component
6 Highest rate – £59.75
7 Lower rate – £22.65
Personal Independence Payments (PIP) – Daily Living Component
8 Enhanced rate – £85.60
9 Standard rate – £57.30
Personal Independence Payments (PIP) – Mobility Component
10 Enhanced rate – £59.75 11 Standard rate – £22.65

SHOW CARD A7 {Weekly rates from 8th April 2019 to April 2020} Attendance Allowance
1 Higher rate for attendance during day AND night – £87.65
2 Lower rate for day OR night – £58.70
Disability Living Allowance (DLA) – Care Component
3 Highest rate – £87.65
4 Middle rate – £58.70
5 Lowest rate – £23.20
Disability Living Allowance (DLA) – Mobility Component
6 Highest rate – £61.20
7 Lower rate – £23.20
Personal Independence Payments (PIP) – Daily Living Component
8 Enhanced rate – £87.65
9 Standard rate – £58.70
Personal Independence Payments (PIP) – Mobility Component
10 Enhanced rate – £61.20 11 Standard rate – £23.20

(A) Thinking about getting in and out of bed on your own, please look at this card and tell me the option which best applies to you?
INTERVIEWER: Do not include help from special aids or equipment such as wheelchairs or stair lifts.

Still looking at Showcard D1, what about…
(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

For all questions (A-M):
1 I can do this without help from anyone
2 I have difficulty doing this but manage on my own
3 I can only do this with help from someone
4 I cannot do this

Have you received help from anyone with getting in out of bed on your own, in the last month? EXPLAIN IF NECESSARY: Include help even if it was for a short time or provided by husband/ wife/ another family member

What about ?
EXPLAIN IF NECESSARY: Include help even if it was for a short time or provided by husband/ wife/ another family member

(B) washing your face and hands
(C) having a bath or a shower, including getting in and out of the bath or shower
(D) dressing or undressing, including putting on shoes and socks
(E) using the toilet
(F) eating, including cutting up food
(G) taking the right amount medicine at the right times
(H) getting around indoors
(I) getting up and down stairs
(J) getting out of the house, for example to go to the doctors or visit a friend
(K) shopping for food including getting to the shops, choosing the items, carrying the items home and then unpacking and putting the items away
(L) doing routine housework or laundry
(M) doing paperwork or paying bills

Response scale for all questions:
1 Yes
2 No

Do you receive this help with because of long standing physical or mental ill- health, a disability or problems relating to old age?

1 Yes for some or all
2 No, none of this help is because long standing physical or mental ill-health, disability or
problems relating to old age

I am now going to ask you some questions about who helps you with different things. I will show you two lists of people who may have helped you.

First, please tell me about all of the people from this list who have helped you? Please only think about help received because of long-term physical or mental ill-health, disability or problems relating to old age.

1 Husband/Wife/Partner
2 Son (including step son, adopted son or son in law)
3 Daughter (including step daughter, adopted daughter or daughter in law)
4 Grandchild (including Great Grandchildren)
5 Brother / Sister (including step / adopted / in laws)
6 Niece / Nephew
7 Mother /father (including mother-in-law/ father-in-law)
8 Other family member
9 Friend
10 Neighbour
11 None of the above

Now, please tell me about all of the people from this list who have helped you with in the last month?

Who was the other person that helped you?

You’ve told me that your (person who helped) helped you. Can I just check, does this person live in this household?

Part 1:
1 Home care worker /home help/personal assistant
2 A member of the reablement / intermediate care staff team
3 Occupational Therapist / Physiotherapist
4 Voluntary helper
5 Warden / Sheltered housing manager
6 Cleaner
7 Council’s handyman
8 Other (please specify)
9 None of the above

Part 2:
Text: Maximum 100 characters

Part 3:
1 Yes
2 No

Thinking about [person who helps], in the last week how many hours have they helped you in person with these kinds of tasks?

Please only think about the hours they were helping you with these kinds of tasks and not about the time they were around in the house or there to help you if you needed it]

ENTER NUMBER OF HOURS AND MINUTES.
IF RESPONDENT DOES NOT GIVE PRECISE ANSWER INTERVIEWER CODE DK
IF 2 PEOPLE HELP AT THE SAME TIME, CODE DOUBLE THE HOURS

1 No help in the last week
2 Less than one hour
3 1-4 hours
4 5-9 hours
5 10-19 hours
6 20-34 hours
7 35-49 hours
8 50-99 hours
9 100 hours or more

Can you tell me whether in the last week your helped you in person with these tasks for:

1 Less than 20 hours
2 20-34 hours
3 Or for 35 hours or more?

How long have you been receiving any of the kinds of help we have been talking about? Would you say it is for less than a year, or one year or more?

1 Less than one year
2 One year or more

How many hours does (helper’s name/role) help you in a usual week?

1 Less than one hour
2 1-4 hours
3 5-9 hours
4 10-19 hours
5 20-34 hours
6 35-49 hours
7 50-99 hours
8 100 hours or more