Guidance

Guidance for the survey of adult carers in England (SACE) 2025 to 2026

Published 5 August 2025

Applies to England

The Department of Health and Social Care (DHSC) is now responsible for SACE. Some survey materials, including translated versions, may still refer to NHS England. This does not affect any of the survey or submission process.

If you have any queries about the survey or any of the materials, email asc.statistics@dhsc.gov.uk.

Introduction

This document sets out the guidelines for conducting the personal social services survey of adult carers in England (SACE). All councils with adult social services responsibilities (CASSRs) with an eligible population of at least 150 carers are required to carry out this survey every 2 years. SACE exists in a national policy context that recognises the vital contribution of unpaid carers, and asks carers about:

• their quality of life
• the impact of services on their quality of life
• their general health and wellbeing

You must follow this guidance as closely as possible to ensure that the survey results from different CASSRs and regions are comparable. The Health Research Authority Social Care Research Ethics Committee (SCREC) has approved the research design and materials.

The national data opt-out will not apply to SACE 2025 to 2026. Further work is underway with CASSRs to support the implementation of national data opt-out across health and care.

You must contact the Department of Health and Social Care (DHSC) if you face exceptional circumstances which make it necessary to deviate from this guidance, for example if questionnaires cannot be distributed and returned in the given fieldwork period. Do not take any action until we have provided approval.   

If we believe that you have changed materials or practices in a manner which has compromised the robustness or comparability of the survey results, then we will note these incidences in the data quality section of the survey report.

If you have any comments or suggestions for improvements, or if you are unclear about what to do, contact the adult social care user survey team by email at asc.statistics@dhsc.gov.uk.

About SACE

SACE helps us understand the experiences of unpaid carers and how services support them. In 2008, the government introduced the national carers strategy, which focused on supporting carers’ financial, mental and physical wellbeing. The strategy stated that carers should be able to:

• fulfil their educational and employment potential
• recognise themselves as carers
• have a family and community life
• be involved in designing care provision at a local and individual level

In 2014, the Care Act gave carers the same legal rights as the people they care for. It introduced simpler assessments, gave eligible carers a legal right to support and set the minimum level at which carers become eligible for support. The Care Act improved transparency, accountability and personalisation in health and social care.

Since 2012 to 2013, SACE has collected data on the services carers receive and their experiences and outcomes. It measures the extent to which services improve carers’ ability to care and live a life outside of their caring role. SACE also assesses the quality of services provided to service users and the impact that services have on carers’ lives.  

SACE data is intended to be used to:

• monitor and benchmark performance through national outcome measures
• inform, monitor and develop delivery of services locally

While some CASSRs may undertake regular feedback through their agreements with service providers, this survey gives a greater insight into outcomes for carers and provides a consistent basis for comparing results across different areas. Feedback from CASSRs has confirmed that SACE is a valuable tool for improving local service provision.

SACE is designed so that each individual outcome can be broken down into smaller groups, making it easier to understand differences between them. Therefore, as well as providing an overall quality of life index, the survey provides evidence on whether specific groups experience better outcomes, whether services are meeting all outcome needs, and, in time, the value added by adult social care services.

Once you have completed the survey, you may share the questionnaire locally with other organisations, including voluntary organisations and health partners. This means you can get similar information about carers not known to you and it may yield interesting local level data for comparison. Do not share the questionnaire until you have completed your SACE fieldwork. This is to avoid carers known to both CASSRs and voluntary organisations completing the questionnaire more than once. Do not include any of this local information in any SACE data returns.

SACE and ASCOF

Data from SACE contributes to the following outcome measures in the adult social care outcomes framework (ASCOF):

• 1C: carer reported quality of life
• 1E: overall satisfaction of carers with social services
• 3B: the proportion of carers who report they have been included or consulted in discussions about the person they care for
• 3C2: the proportion of people who use services and carers who find it easy to find information about services
• 5A2: the proportion of people who use services and carers, who reported that they had as much social contact as they would like

You can find the definitions for these outcome measures in the Adult social care outcomes framework: handbook of definitions.

Overview

This chapter covers the design of SACE and lists the materials to be used by CASSRs. It also covers how to:

• maximise response rates
• engage staff and the public
• maintain confidentiality
• manage information governance with third party providers

Survey materials

In addition to this guidance, the following documents are available on the main SACE page.

Survey materials SACE 2025 to 2026

This folder contains the following documents in English:

• questionnaire - and a large print version
• covering letter - and a large print version
• reminder letter - and a large print version
• 2 interview scripts (a face-to-face interview script and a telephone interview script) - only to be used in specific circumstances. The questionnaire should be used as standard
• consent form - used only for face-to-face interviews
• additional questions form (Excel document)
• translation request sheet - for carers to request the survey in one of the languages listed below

Translation materials SACE 2025 to 2026

This folder contains translated versions of the questionnaire, covering letter, reminder letter and consent form in the following 17 languages:

• Arabic
• Bengali
• French
• Greek
• Gujarati
• Hindi
• Italian
• Mandarin
• Polish
• Portuguese
• Punjabi (India)
• Somali
• Spanish
• Tamil
• Turkish
• Urdu
• Vietnamese

Other documents

The other documents on the page are the:

• question bank (Excel document) - previously approved additional questions
• sample size calculator (Excel document)
• survey data return (Excel document)

Changes to the 2025 to 2026 materials

The only change from the 2023 to 2024 edition is that we have removed the following fields from the survey data return document:

• reported health condition of cared-for person: autism (excluding Asperger syndrome and/or high functioning autism)
• reported health condition of cared-for person: Asperger syndrome and/or high functioning autism field

Further details on changes to reporting on autism can be found in the ‘Carers data’ section in the ‘Submitting the data’ chapter.

Maximising response rates

It is important that you get as many responses as possible to reduce the risk of non-response bias. For example, if more people who are dissatisfied with services respond to the survey, then the results will overestimate the level of dissatisfaction in the population. The higher the level of non-response, the greater the risk of non-response bias in your results. Increasing the sample size, without changing the response rate, will not mitigate this problem.

We have designed the survey to maximise the number of responses. The questionnaire and covering letters are written to help carers understand that participation is a worthwhile activity. The survey materials guarantee confidentiality and highlight the steps to take if carers need help to complete the survey.

We have designed SACE to enable as wide a range as possible of potential respondents, including:

• people who do not have English as a first language
• people with disabilities and long-term health conditions
• people with limited literacy skills
• anyone who needs support to complete the questionnaire

You are also expected to give due consideration to the diversity of needs of the carers in your area in terms of provision of materials and assistance.

You are advised not to use incentives. This is to ensure that the data is comparable across CASSRs. Previous analysis on question responses for CASSRs that used incentives discovered differences in the question responses. It did not increase the number of people who responded.

Engaging CASSR staff

Make sure all your staff are aware of SACE and its aims and objectives. This includes staff who are not directly involved with SACE but who may work with carers. This way, if asked by carers, staff can encourage response and discuss any concerns.

You must also inform your senior management about SACE. It is an ethical requirement that participating CASSRs get senior management permission before sending out questionnaires to carers.

It is in your interest that senior management are informed of the need to undertake SACE and engaged as early as possible.

You may have to carry out a local ethical review if you do not run SACE in the way outlined in this guidance document, or if you choose to include additional questions in the questionnaires. The ‘Finalising materials’ section of the next chapter has more information on additional questions.

Telling carers about the survey in advance

You should consider engaging the public, especially carers, as early as possible. This encourages participation and maximises response rates.

You should consider issuing a general press release through the local press or through relevant local carer group networks.

You may also wish to let local carers’ organisations know about the survey, so they can publicise it with carers.

Confidentiality

You must ensure that all information on participating carers remains confidential. Staff in CASSRs, other than those administering SACE, cannot know whether individuals have completed a questionnaire or how questions were answered. The questionnaires, covering and reminder letters all contain assurances of confidentiality.

You need to generate a serial number or unique reference number (serial number or unique serial number) for each SACE questionnaire so that your returned questionnaires can be mapped back to a participant. This means you can follow up with people who have not responded and bring together information from a variety of data sources. You will therefore need to consider how personal data is handled in line with data protection law (UK General Data Protection Regulation (UK GDPR)).

You must strictly control access to the carer details that are used to send out the SACE questionnaire. Computer files need to be password protected and stored on a secure server, and access to these must be restricted to those involved in:

• posting the SACE questionnaire
• adding the serial number to the questionnaires
• setting up codes for analysis

Unsecured email addresses must never be used to send content which includes the names or other personal details of carers. Completed SACE questionnaires must be stored securely in locked cabinets.

You must retain paper copies of all questionnaires until the publication of the final 2025 to 2026 SACE report. After this point you are free to securely dispose of paper copies. You may wish to retain paper copies for longer if you believe that participants are likely to take part in any follow-up studies.

The treatment of paper and scanned copies must be in line with your local information governance procedures and meet the requirements of UK GDPR.

Survey costs

You should be able to estimate how much you will have to spend on SACE by drawing on your experience of running previous surveys as well as consideration of the process outlined in this guidance. Costs will include the following.

Staff time

Surveys are staff-intensive activities. You might consider appointing a project manager to ensure all the necessary stages of the survey progress according to timetable and to take responsibility for selecting the sample and negotiating with social workers.

More routine activities could be allocated to other staff, for example:

• checking the sample
• printing all the necessary documents
• sending out questionnaires and reminders
• monitoring response
• booking in returned questionnaires

You could allocate more specialist activities, such as local level analysis of the results, to trained staff.

Stationery

You need to print copies of questionnaires and other materials. You will also need to provide and stuff envelopes, attach address labels and pay for postage. This includes paying postage on envelopes for carers to return their completed survey.

Outsourcing the survey

You may consider outsourcing elements of SACE to a third party. For example, a data capture company might be used to scan completed de-identified questionnaires into a dataset format. This approach may help you meet submission deadlines by removing the need to enter data manually.

When deciding whether to outsource elements of SACE to a third party, you should refer to your local information governance arrangements in the first instance. This is because the third party will need to ensure that all relevant information governance issues are considered throughout the process of exploring, making and implementing an outsourcing decision. If a decision is made to outsource elements of SACE, then you must continue to work in line with data protection laws, including UK GDPR.

In running SACE, you are likely to be acting as a data controller, outsourcing tasks under clear instruction and with strict controls to third parties who then act as data processors in carrying out the agreed work. You are responsible for ensuring that any third party operates by an acceptable code of conduct, particularly around confidentiality.

Other costs

You will also need to account for the cost of phone bills and interviewers where the carer requests the questionnaire to be administered by telephone or by face-to-face interview.

Further additional costs can arise from providing other accessible formats to ensure all participants can complete the survey - for example, translating any additional questions or producing a Braille version.

Data sharing with service providers

If you outsource any of your carer services to external organisations, you should ensure that systems and agreements for data sharing and protection are established with relevant parties. It is recommended that data sharing requirements are written into contracts when setting up such arrangements to avoid this situation.

Where required, you should be sure that carers are made aware that data sharing with third parties may be required. This ensures both the smooth running of the assessment and delivery process, and the ability to evaluate the performance of providers and CASSRs through mechanisms such as surveys. As with outsourced survey partners, this issue must be considered in the context of UK GDPR.

Preparing the survey

This section covers the actions you need to take to prepare the survey before SACE questionnaires are sent out to participating carers. Ahead of this fieldwork period, you must:

• make necessary amendments to written materials
• determine the eligible population
• generate administrative information

You also have the option to formulate and submit your own questions to DHSC to include in the SACE questionnaire for local research purposes. More information on additional questions in the ‘Finalising additional questions’ section below.

Finalising materials

You need to customise the survey materials provided alongside this guidance. Sections which require amending are identified with red text and yellow highlighting (you must remove all highlighted and red text once amendments are completed).

You may also adapt the materials to match the formats you use to produce and process your other publications. This may include, for example, making changes to enable the use of specialist survey software in the production of, and scanning of, questionnaires.

Any amendments must be minor and must not be made without prior consent from DHSC. You should send any amendment requests to asc.statistics@dhsc.gov.uk.

Finalising covering and reminder letters

You must add:

• the name of your social services department or relevant carer’s team
• your CASSR’s relevant contact details including a postal and email address and a telephone number
• a telephone number for carers to access independent support and advice to help them complete the SACE questionnaire
• all relevant dates - these can be found in the ‘Timetable’ chapter of this guidance
• your corporate logo and the director of adult social services’ signature
• details for the carer to make independent complaints. The contact details need to be independent of the adult social care or research team that is administering SACE. You may include contact details of the CASSR’s complaint service provided this is independent of the survey

No other format changes are permitted. No other text may be deleted, added or amended - unless with prior permission from DHSC.

In addition to the covering letter, you must also provide additional transparency information to the carer to inform them of their rights. This information should be in the form of a separate printed information sheet and/or a link to the CASSR’s online privacy or transparency notice.

Finalising questionnaires

You must create and add a unique serial number for tracking respondents to an appropriate location on the SACE questionnaire. This is so that the non-questionnaire information can be added to the questionnaire data on the data return. CASSR staff should not, however, be able to identify the respondent (see the ‘Breaching confidentiality’ section in the ‘Collecting the data’ chapter). You should place the unique serial number on the survey in a way that minimises the opportunity for inadvertent removal by respondents.

You must also decide how many optional questions you wish to use. These include optional free text questions as well as a question concerning participants’ willingness to participate in further research. If you choose to include an optional question in the standard survey, then it must also be included in the translated versions.

You should remove any questions asking the age, gender and ethnicity of participants if you can provide this information from your records. These questions must remain in the questionnaires if this demographic data is not available by other means.

You must not make certain changes to the questionnaires. The following changes are not permitted under any circumstances on questionnaires:

• deleting any mandatory question
• changing the wording of existing questions
• changing the size or style of font used
• removing white space so that the questionnaire fits on fewer pages
• adding CASSR details, corporate logos or branding

Unpermitted changes might undermine the survey results. If they do occur, DHSC may list them in the data quality section of the survey report to allow those who use the data to assess its strengths and comparability.

You must only send carers the materials they need to complete the survey. You must not use the survey to send out any other information such as promotional leaflets.

Finalising additional questions

You can add up to a maximum of 6 additional questions into your questionnaire.

These questions may be:

• for local research purposes
• added in conjunction with other CASSRs in the same region to provide benchmarking data to support locally focused improvements. The inclusion of locally relevant questions may encourage participation and improve response rates

These 6 questions may be from the question bank of previously approved questions or new questions. Previously approved additional questions (that is questions in the current question bank) do not need further approval.

You may also add response options to questions 5 and 6. You do not need to request approval from DHSC to add additional responses to questions 5 and 6. However, for information purposes, you should let DHSC know that you have made this change using the additional question form. This will not count in your additional question cap.

You must submit any proposals for new additional questions and free text boxes using the additional questions form. Send the completed form to asc.statistics@dhsc.gov.uk.

The deadline for submitting new question requests is 5 September 2025.

If DHSC approves the questions, you can add them to your survey.

New questions must be subject to cognitive testing to ensure that they are understood by carers in the way that is intended, unless you know they have been tested and used in previous surveys. New questions must also be approved in accordance with local research governance arrangements, since they will not have been accounted for in the research ethics clearance given by SCREC.

If you are including additional questions, you must:

• make sure questions address a genuine research need and relate to the purpose of the survey
• have a reason to collect the information and know how it will be used. You must not ask for information that you do not need
• consider whether you need a new question, or whether you can add a free-text box to an existing question. A free-text box will allow respondents to provide contextual information which may be very relevant for local purposes
• aim to make the question relevant to all carers receiving a questionnaire; this will help to mitigate any potential negative impact on response rates that the inclusion of additional questions may have. One way to make sure questions remain relevant to all carers is to include a ‘not applicable’ type option
• make sure that the placement of any new questions does not affect the understanding of subsequent questions
• include them in the translated versions of the questionnaire

You cannot add questions to:

• gather information about the religion or sexual orientation of carers
• test reactions to proposed new services. This type of question may raise a respondent’s expectations and potentially influence their responses

Determining participation

You will need to determine the:

• list of carers who are eligible to participate in the survey (the eligible population)
• group from which the sample of carers is drawn (the sample frame)
• list of carers who will be sent the questionnaire (the sample)

You must follow this process to get a sample from the eligible population:

1. Eligible population: all carers over 18 who would have previously been included within the Short and Long Term (SALT) measure LTS003, table 1, if the table were populated on your chosen extract date rather than 31 March.
2. Sample frame: your eligible population minus carers who have been excluded because their circumstances have changed since the extract date and carers who have asked to be excluded from surveys.
3. Initial sample: the carers you have randomly selected to receive a questionnaire. See more on randomly selecting a sample in the ‘Sample’ section below.
4. Final sample: the carers who you send a questionnaire following any final exclusions and replacements.

There is more information on each of these stages below.

Eligible population

You must extract the population of carers who are eligible to participate in the survey on a date between 1 July and 30 September 2025.

The eligible population includes all carers who are aged 18 and over and who are caring for an adult aged 18 and over. From the date you extract the population data, carers must have either:

• received carer support at any point in the last 12 months
• been assessed in the last 12 months but received no direct support, irrespective of whether their cared-for person received respite care

The eligible population is the same as previous years and, despite the shift from SALT to client level data (CLD) collection, the population should still align with the previous SALT LTS003 table 1 cohort.

Once the eligible population has been extracted, you should check that your records are correct, for example, that all contact data is up to date.

As you check the data you may discover that some:

• records were out of date at the time of your extraction
• subjects in the extract should not have been included in the eligible population figure (for example if a carer has died, moved away or stopped their caring over 12 months before the eligible population was extracted)

In such cases, you must remove subjects from the eligible population figure.

Sample frame

At this stage, depending on the completeness and quality of the data extracted, you must create a discrete sample frame by excluding members of the eligible population who cannot be selected to receive a questionnaire.

Exclude people whose circumstances have changed since the data extract such as: 

• carers who have died
• carers who will be in hospital at the time of the survey
• carers who have moved into residential or nursing accommodation
• carers who are in active dispute with you at the time the survey is being sent out. A dispute is defined as a complaint that cannot be resolved by the CASSR and moves on to be handled outside of the CASSR by the Local Government and Social Care Ombudsman
• carers who are involved in an open safeguarding alert or investigation. Carers should also be removed from the sample frame if their cared-for person has an open safeguarding alert
• carers who have contacted you in the past expressing a preference to opt out of surveys or complain about receiving a survey (the national data opt-out does not apply to the 2025 to 2026 survey)
• carers whose cared-for person has died
• people who were carers for only a very short period of time that ends before the survey is carried out

Do not exclude carers:

• if they have moved out of the area, but they are still being supported by you on the basis that they have a reputation for complaining about services. This would seriously bias the results of the surveys and reduce their usefulness
• on the basis that their cared-for person has moved into residential or nursing care since their last review

We would encourage you to undertake these checks and exclusions while you are generating your sample frame. If you wait until after the sample has been drawn to exclude carers, then you will have to replace those who are excluded from your sample.

You may also consider excluding eligible carers if they have recently participated in a survey and you believe that resurveying them could lead to survey fatigue and a low response rate. If you need advice on whether or not to exclude carers due to survey fatigue, contact DHSC at asc.statistics@dhsc.gov.uk.

You should only remove carers due to survey fatigue if you can still achieve a sufficiently large sample size to meet the minimum requirement, and if removing the carer will not cause the survey’s sample to be biased. Bias could occur, for example, if your previous survey focused on carers in a certain geographical area or included carers of people with dementia. If you are unsure about introducing bias into your sample frame, then you must contact DHSC for advice.

Any carers removed (due to survey fatigue or because they’ve asked to be removed) must still be included in your eligible population.

Sample

Once you have established the size of the sample frame you need to work out the size of your sample. Your sample size must produce survey results that will have a required margin of error of less than plus or minus 5%.

To calculate the correct sample size, you must enter the number of the eligible population into the sample size calculator, along with the predicted response rate. The predicted response rate could be estimated from local surveys of carers that you have previously conducted, or your response rate to the last SACE.

You may choose to send out more questionnaires than needed to meet the minimum requirement, reducing the margin of error and increasing the accuracy of the survey. If you take this approach, the sample size calculator also allows you to estimate the precision of the survey.

You must select the sample randomly. Ensure the carers in your eligible population are listed randomly. Use the ‘selecting the sample-minimum’ or ‘selecting the sample-more’ tabs in the sample size calculator to calculate your random starting point of your list and the required sampling interval. The tabs in the worksheets will pre-populate using the information you have entered to calculate the sample size.

At this point you may also choose to select a reserve sample. This acts as a data source in cases where carers must be removed from the primary sample, or if you find that the response rate is insufficient to meet the margin of error requirement. Generate your reserve list using the sample size calculator. You should remove members of the initial sample from the sample frame and estimate the number of people you might need.

Once you have selected your initial sample, you should check again that everyone is eligible. Even if you have already checked the list, it is likely that between the eligible population extract date and the date the sample is generated some carers will no longer be suitable participants, for example those who have moved away or died. You will need to randomly select replacement carers, either from the pre-existing reserve sample or from a new reserve sample.

After you have completed the checks and made any changes, you will have the final sample. This is the list of carers that you will send the questionnaires to.

Once you have finalised the sample and issued questionnaires you must not remove any carer from either the sample or the eligible population. This includes carers that could have been removed after the sample was drawn due to the reasons described above. 

You can only add carers to your sample once questionnaires have been issued if a top-up sample is required. This usually happens when response rates have not been as anticipated, and the overall margin of error requirement looks unlikely to be met.

How to calculate the sample size

Any estimate that we derive from SACE responses is subject to a degree of uncertainty, which is expressed statistically as a ‘margin of error’. The higher the proportion of survey respondents is in relation to the total carer population, the lower the margin of error. The requirement for SACE is that the results have a margin of error of less than plus or minus 5%. This means that if 50% of survey respondents say they are very satisfied with the services they receive, we can be reasonably confident that the figure for all eligible carers from that CASSR will be between 45% and 55%.

The sample size calculator document enables you to estimate how many carers you need to sample to achieve the minimum required margin of error of less than plus or minus 5%.

As a rough guide, table 1 in the first tab of the sample size calculator shows an example for a CASSR with 1,000 eligible carers and a predicted response rate of 40%. The table shows that for this scenario, the total number of completed questionnaires needed is 278, which implies that 696 questionnaires need to be sent out to allow for non-response.

Table 1: minimum sample size calculation

Eligible population	The anticipated response rate based on previous surveys (%)	Number of returned questionnaires needed to meet the 5% margin of error	Sample size - number of questionnaires to be sent out based on anticipated response rate	Sampling interval needed to select every nth carer
1,000	40%	278	696	One in every 1.44 cases

The sample size calculator also allows you to consider sending more questionnaires than needed to meet the minimum requirement to reduce the margin of error. As a rough guide, table 2 in the first tab of the sample size calculator shows what happens if the number of questionnaires sent out is increased from 696 to 900. The margin of error subsequently reduces from 5.0% to 4.1%.

Table 2: surveying more than the minimum requirement

Eligible population: the number of carers the sample is drawn from	The anticipated response rate based on previous surveys (%)	Number of returned questionnaires needed to meet 5% requirement	Sample size - number of questionnaires needed to be sent out based on anticipated response rate	Margin of error	Sampling interval needed to select every nth carer
1,000	40%	360	900	4.1%	One in every 1.11 cases

Selecting the sample

You must take a random sample of eligible carers to ensure that the results of the survey are representative of all carers. One recommended way to select a random sample of carers is to take a systematic random sample. A systematic random sample is when one in a certain number of carers is randomly selected using a consistent pattern, for example every 6th or 10th carer. This sampling interval is shown in tables 1 and 2 of the sample size calculator.

The sample calculator spreadsheet has 2 additional tabs entitled ‘selecting the sample-minimum’ and ‘selecting the sample-more’. These tabs will be pre-populated based on the information you have already entered.

The following example in table 3 shows which carers should be selected if you are aiming to meet the minimum requirement when selecting the sample.

Table 3: selecting a random sample and the number of participants

Eligible population	Sample size - number of questionnaires needed to be sent out	Sampling interval needed if you want to select every nth carer	Random start
1,000	696	1.44	2

Table 4 represents a list of your carers with each assigned an eligible population number. The ‘flag’ column shows whether a carer is selected for the sample size calculator.

Table 4: identifying carers to include in your sample using the sample size calculator

Note: 1 means flagged for inclusion. An empty cell means not flagged.

Eligible population number	Flag
1
2	1
3	1
4	1
5
6	1
7	1
8
9	1
10	1
11
12	1
13	1
14	1
15
16	1
17	1
18
19	1
20	1

Extracting administrative data

You should extract and check the administrative data from your stored records. This is the data that you should include in your survey data return document, in addition to the question responses. See the ‘Survey data return: full list of data fields’ section in the ‘Submitting the data’ chapter.

It is important to remember that the data submitted on your survey data return must be correct as of the date the eligible population is extracted. If any information relating to a carer has changed since the extract date do not update it.

You may also add additional local administrative data from your stored records. While these will not be returned for use in the final 2025 to 2026 SACE report, they might assist in your local analyses. We also suggest recording the carer’s address and contact details and whether the carer has requested an alternative format.

If a carer is caring for more than one person aged 18 or over, you may need to use local information to determine who the main cared-for person is, and to populate relevant data items (for example primary support reason). If you are unable to identify this information, then you will have to select ‘unknown’ for categories relating to the cared-for person on the data return.

You should record this data in a dedicated survey database or spreadsheet along with the unique serial number that you have allocated. You may wish to use information in your code that is useful for your CASSR, for example local area or team codes.

Alternative formats

To maximise response rates and represent the full range of carers, you must identify any people in your sample who will need access to alternative versions of the survey. You must check your records for information about a carer’s likely communication needs, and whether it is likely that a carer would be able to complete a postal questionnaire unaided. If you conclude that a carer is unable to complete the survey unaided, consider whether:

• there is someone already known to the participant who could help them complete the questionnaire
• it is necessary to arrange assistance for this carer
• the participant needs the questionnaire in an alternative format
• the carer needs the questionnaire in a language other than English or the provision of an interpreter

You should have most of this information in your carer database.

You can find a list of the alternative formats and translations provided by DHSC in the ‘Survey materials’ section in the ‘Overview’ of this guidance.

If you have included additional questions in the questionnaire, make sure you include these in any alternative formats you send out.

Accessibility

You should have on record the information and communication needs of carers to comply with the Accessible information standard. In the case of people with disabilities and long-term health conditions, you should consider the best means to make initial contact and provide details of options for taking part. For example, you could invite people who are known to have severe visual impairments by telephone. Carers who might require assistance from a sign language interpreter could be first approached by someone known to them, such as a social worker.

In addition to the large print version supplied by DHSC, you will have to make the questionnaire and covering letters available in any additional formats or languages that are requested by carers, including (but not limited to):

• Braille
• easy read
• audio
• an electronic version of the questionnaire to be sent and returned by email. This option is currently only open to carers who could not otherwise participate

It is your responsibility to make the materials available in other formats to carers and to support carers to respond.

In certain circumstances, you may wish to offer a telephone or face-to-face interview if carers request this. However, this should not be the standard method used to gather responses.

Non-English speakers

You should store details of the first language and communication preferences of carers in their social care records. You must arrange for translated documents locally if survey materials are required in language versions other than those we provide.

A summary on what documents to send out is below:

• where you know the carer’s first language is English - send the English version of the materials
• where you know the carer’s first language and it is not English, and the preferred language is either not known or not English - send the English version of the materials and the version in their known first language
• where you know the preferred language is English (even if the first language is not English) - send the English version of the materials and the translation request sheet
• where you do not know the carer’s first language - send the English version of the materials and the translation request sheet

In some instances, you could consider having the questionnaires administered as face-to-face interviews by interpreters. Given that response rates to postal questionnaires from ethnic minorities are traditionally low, using interpreters may enable more carers from this group to be included. You could ask family and friends to interpret where available, although we would recommend the use of professional interpreters to ensure that responses are translated accurately.

Interpreters will need to be able to speak to respondents in colloquial versions of their languages. You should monitor the work of interpreters to ensure consistency and to check that interpreters are not editing respondents’ answers before recording them. One way of doing this would be to have all translated interviews recorded and to arrange for a sample (such as 1 in 10) to be reviewed by a second interpreter as a check.

Providing assistance

Alongside making additional formats available, you will have to determine if other assistance is required, usually in response to calls to the additional help contact number included on the cover and reminder letters.

You must ensure that if a carer needs help to complete the questionnaire that the person who helps them is not involved in delivering services. This would breach confidentiality and decrease the likelihood of carers feeling able to voice criticisms of the service they receive, biasing the survey results.

We recognise that this may be difficult to implement, especially in cases where carers feel comfortable with certain staff members. We, therefore, recommend that you are proactive in offering alternative forms of help to carers to complete a questionnaire, by encouraging friends and relatives to assist them.

It is possible to administer the survey as a face-to-face or telephone interview. This may be the appropriate course of action, for example, for respondents who have disabilities or limited literacy skills. You should only offer interviews to carers who request them in response to the initial letter or reminder letter and where it is not possible to find appropriate support to enable them to complete a postal questionnaire.

Overall, the number of interviews completed should be small in relation to the size of the sample. You could also consider using advocacy services, although we only recommend doing this when the carer already has an ongoing relationship with an advocate.

Collecting the data

This section covers the final stages of the survey. There are several tasks for you to complete, including:

• distributing the questionnaires and covering letters to the final sample
• sending reminder letters to those who have not responded to the initial posting
• adding carers to the final sample if necessary to meet the required response rate

This is also when you need to provide any assistance necessary to help carers complete the survey - for example, offering interviews to complete the questionnaire by telephone or face-to-face.

You must also record and check all data, before submitting the completed survey data return.

You will also have to consider whether any carer’s responses indicate that their confidentiality should be breached to protect their health or safety. See the ‘Breaching confidentiality’ section below for more information on when this would be appropriate.

Doing the fieldwork

The fieldwork period, which is the period when the questionnaires are distributed and collected, should begin on 1 October 2025 and be completed by 30 November 2025.

You must send the following to each carer in your final sample:

• a questionnaire
• the covering letter
• pre-paid envelope to return the questionnaire

Three weeks after you sent the questionnaire, you should send a reminder letter to all those who have not responded, along with a second copy of the questionnaire.

You should not send this reminder to carers who have already responded to the questionnaire or have contacted you to indicate that they do not wish to participate in the survey.

You must send reminder letters to all those who have not responded to the first questionnaire, even if the overall level of response is already sufficient to meet the plus or minus 5% margin of error and therefore the confidence interval requirement. This is to counter non-response bias, as the type of people who respond to the initial questionnaire may be different from those who respond once prompted by a reminder letter. Following this process is necessary to ensure consistent results between CASSRs.

You have options in how you schedule the fieldwork. Whatever option you choose, you must remember to give time for respondents to complete and return the questionnaires.

You may either:

• issue all questionnaires in one week and all reminders 3 weeks later
• develop a timetable in which questionnaires and reminders are sent out in waves, so that the workload is spread out over all the available weeks

Table 5: example timetable for sending out questionnaires and reminders in 4 waves

Action	6 Oct	13 Oct	20 Oct	27 Oct	3 Nov	10 Nov	17 Nov
Questionnaires sent out	Week 1 sample	Week 2 sample	Week 3 sample	Week 4 sample	No action	No action	No action
Initial return date (end of week)	No action	No action	For week 1 sample	For week 2 sample	For week 3 sample	For week 4 sample	No action
Reminder	No action	No action	No action	Send to week 1 sample	Send to week 2 sample	Send to week 3 sample	Send to week 4 sample

If there are insufficient responses after the reminders have been sent, then you have the option, if time allows, to draw from the reserve sample, or to generate an additional top-up sample. We recommend that you consider this possibility when planning your fieldwork schedule.

Although the fieldwork should be completed by 30 November 2025, you can decide how long to continue accepting the returned surveys after the fieldwork period has ended. This will not affect the mandated deadline. You should note how many surveys were accepted after the fieldwork period ended in the relevant question of the ‘survey process information’ tab of your survey data return.

Interviewing respondents

You will need to customise interview scripts in the same way as the covering letters and postal questionnaires. The person conducting the interviews should be trained and experienced. You should brief the interviewers about the aims of the survey. Interviewers must understand the importance of confidentiality and ensure the participant’s confidentiality.

If an interview is held, you will need to make sure there is an active approach to establishing informed consent because of the increased level of intrusion. Before asking any questions, the interviewer must explain the purpose of the survey and stress that the carer can decide to withdraw their consent or stop the interview at any time. The interview scripts will guide the interviewer to explain this. If the interview is face-to-face, the participant must sign the consent form provided in the materials.

Transferring data onto the survey data return

Using the unique code, you will need to merge the questionnaire and administrative data and transfer them onto the survey data return document. You should read the ‘Instructions’ tab of the data return before starting this task.

You must include all those who have been sent a questionnaire (the final sample) on the data return, even if they have not completed the questionnaire. A response must be recorded for any questionnaire returned that includes answers to at least one of questions 1 to 27 (mandatory or optional) from the questionnaire documents supplied by DHSC.

Record a non-response for:

• a questionnaire that is not returned
• a questionnaire returned completely blank
• a questionnaire returned containing only answers to locally added questions and/or optional question 32 (participants’ willingness to take part in further research)

If a carer has removed their unique serial number from their returned questionnaire (for example by tearing off the corner of the questionnaire), you should still include the respondent in your data return. You should record the number of respondents who have removed their unique code in the ‘any other explanations’ box at the top of the ‘Validation tables’ tab.

You should still be able to answer some of the mandatory fields for these respondents such as whether a translated version was used. This will enable the responses to be included in as much of the summary analysis as possible.

There may be instances in which a respondent has answered a questionnaire in a contradictory manner. If 2 or more boxes are ticked for a question in which only one box should be ticked, then you must record the response as ‘unknown’ (the carers data code is −9).

For all other cases, you must record the response as stated by the carer. For example, if a respondent has chosen conflicting answers for a question that asks them to ‘tick all that apply’, then you must record all the boxes ticked by the carer.

You should record whether the original or reminder version of the questionnaire was used. If the questionnaire was completed on the original version but after the reminder letter and second copy of the questionnaire was sent out, then the respondent should still be coded as replying to the original version. If the carer returns both the original and reminder version of the questionnaire, you should review which questionnaire is most complete and use this data in the data return. If the completion is the same for both questionnaires, then you should use the reminder survey.

Breaching confidentiality

You may find that carers have given responses suggesting that their health or safety is at risk. It is at your discretion to decide what should trigger a breach of the confidentiality clause. However, it is acceptable to do so in circumstances where:

• the respondent indicates that their health and safety is at risk in response to question 10, in any other survey question or through free text comments
• the responses of the individual indicate that they are experiencing a serious issue with their care
• the respondent uses the questionnaire to make a comment about their care and the comment shows a clear expectation that this will be followed up by the CASSR

While the most negative response to question 10 would clearly indicate a threat to safety, you might also consider that a combination of answers to other questions constitutes grounds for contacting the carer.

You must make contact with the carer in the first instance to check whether they are happy for their comments to be passed on to an appropriate member of staff for consideration. Initial contact should not be made by a social worker or the person’s care worker. Once you have consent, follow local protocols for dealing with the issues raised.

Checking the data

The data return must be checked prior to submission. You must make sure that:

• all survey data is included
• worksheets have not been corrupted by the addition or removal of columns
• there are no blank rows in the main data worksheet
• all data correctly represents administrative records and questionnaires as appropriate

You must not delete unused columns (such as to voluntary fields and optional questions that you have chosen not to record) as it will corrupt the data return.

The survey data return contains features to help quality assure the data before submission. Conditional formatting has been applied to the cells in the ‘Carers data’ tab to show where data is missing or may not be correct. The rules for these formats are detailed on the ‘Carers data - formats’ tab.

You should also review the ‘Validation tables’ tab which displays the results of aggregate checks on data input on the ‘Carers data’ tab. If a check yields a query for you to investigate - for example, if data is missing or if a result falls outside its expected range - then the appropriate cell is shaded red until an explanation is given.

You must not delete or override these validations. This can happen accidentally when copying and pasting data from other tabs.

Once you have submitted the data, we will send you a validation report.

Submitting the data

We will collect the data using the Strategic Data Collection Service (SDCS), which is a secure system. See the SDCS website for details of how to register for the service.

Once you have registered with SDCS, we will send you instructions on the submission procedure.

You must submit your completed survey data return document through SDCS by 26 February 2026.

We will check the validity of data returns that have been completed and submitted and will provide feedback in the form of a data quality report. You will then be given the opportunity to review the report and resubmit data if necessary.

If your data contains significant data quality issues after the resubmission deadline, it is likely that you will be named in the data quality section of the final DHSC report. This is to ensure that anyone using the data is aware of any potential anomalies.

If you fail to submit by the first mandated deadline (26 February 2026) then this will also be included in the data quality section of the final DHSC report to ensure that anyone using the data is aware that the data has not been validated.

As part of your data submission, we also welcome comments on the survey process, for example:

• thoughts on how it might be improved
• suggestions of practice to share with others
• other questions that could be collected nationally

 We ask that you communicate your views in the data return via the final comments box in the ‘Survey process information’ tab of the survey data return.

Survey data return: full list of data fields

This section lists all the data fields included in the SACE data return document. This is the information that will be collated nationally. The survey data return contains further guidance.

If you choose to add additional data collected locally to the survey data return document, this must be removed before submission through SDCS. Any completely blank lines, for example, carers initially selected but subsequently removed from the sample before the questionnaires were distributed for the reasons listed in the ‘Sample frame’ section, must also be removed.

It does not matter if record numbers are no longer consecutive so long as you know who each submitted record refers to in case we have any queries.

Lines for non-respondents should not be removed. The items highlighted in yellow (mandatory fields) should be completed for non-respondents as well as for respondents. This will enable response bias to be assessed.

Carers data

The ‘Carers data’ tab in the survey data return document collects the following for everyone in the sample:

• administrative data for the survey, including the CASSR code, serial number, primary key, stratum (except for unique code, this data is automatically generated)
• method of collection
• whether the carer has responded or not
• age of carer
• gender of carer
• ethnicity of carer - additional guidance on the unknown ethnic group codes is provided in the ‘Carers data - codes’ tab of the survey data return document
• sexual orientation of carer
• religion of carer
• method of assessment or review (previously SALT measure LTS003, table 3a), as in:
  • whether the carer was assessed jointly with the cared-for person
  • separately from them
  • whether no review or assessment took place during the year
• support provided to carer (previously SALT measure LTS003, table 1a columns) - the form of support provided to the carer:
  • direct payment only
  • part direct payment
  • CASSR managed personal budget
  • CASSR commissioned support only
  • information, advice and other universal services or signposting
  • no direct support provided to carer
• support involving the cared-for person, as in whether or not any respite or other forms of carer support were provided to the cared-for person (previously SALT measure LTS003, table 1a, Respite or other forms of carer support delivered to the cared-for person column).
• funding status (cared-for person) - whether the cared-for person:
  • is supported and funded by the CASSR. Where the cared-for person is partially funded by the CASSR, as in, they pay some of the cost themselves, this should be coded as funded by the CASSR
  • pays the full direct costs of the services they receive, but whose support is arranged by the CASSR
  • self-funds the services they receive with no involvement from the CASSR
  • is not known to the CASSR
• delivery mechanism of long-term support for the cared-for person (previously SALT measure (LTS001) - the form of support provided to the cared-for person by the CASSR:
  • direct payment only
  • part direct payment
  • CASSR managed personal budget
  • CASSR commissioned support only
  • community setting only
• primary support reason (PSR) of the cared-for person. Some carers assessed will not have a cared-for person linked on the client database or the cared-for person may not have a PSR identified. If so, you should select the category ‘unknown’. If you do not   provide support to the cared-for person, but their records include the support reason, then you can use your discretion as to whether to populate with the PSR or record as ‘unknown’
• reported health condition (RHC) of the cared-for person. This data should be recorded as it appears in CASSR records. To bring recording in line with ICD-11, a new RHC ‘autism spectrum disorder’ (ASD) has been added to the data return. The previously used RHCs of ‘autism (excluding Asperger syndrome and/or high functioning autism)’ and ‘Asperger syndrome and/or high functioning autism’ are no longer collected and have been removed
• whether an advocate has been used
• whether they need an interpreter
• whether a translated version of the questionnaire was used
• whether the carer responded to original postal questionnaire or a reminder (optional field)
• whether the carer requested a copy of the report (optional field)

Questionnaire questions

The ‘Carers data’ tab collects data on the questionnaire response. The questions are listed below.

1. How old is the person you care for?

2. Does the person you care for have….? (For example, dementia or alcohol dependency)

3. Where does the person you care for usually live?

4. Overall, how satisfied or dissatisfied are you with the support or services you and the person you care for have received from social services in the last 12 months?

5. Has the person you care for used any of the support or services listed below in the last 12 months? (For example, personal assistant or home help)

6. Have you used any of the support or services listed below, to help you as a carer over the last 12 months? (For example, training or support to keep you in employment)

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

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

9. Thinking about how much time you have to look after yourself - in terms of getting enough sleep or eating well - which statement best describes your present situation?

10. Thinking about your personal safety, which of the statements best describes your present situation?

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

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

13. Thinking about the other people you have caring responsibilities for, which of the following best describes your current situation? Please exclude the person you spend most time helping

14. In the last 12 months, has your health been affected by your caring role in any of the ways listed below? (For example, tired, depressed or physical strain)

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

16. How often do you feel lonely?

17. In the last 12 months, have you found it easy or difficult to find information and advice about support, services or benefits?

18. In the last 12 months, how helpful has the information and advice you have received been?

19. In the last 12 months, do you feel you have been involved or consulted as much as you wanted to be, in discussions about the support or services provided to the person you care for?

20. In addition to your caring role, please tell us which of the following also applies to you? (For example, retired, employed full-time or not paid in work)

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

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

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

24. Over the last 12 months, what kinds of things did you usually do for the person you care for? (For example, personal care or giving medicines)

25. Do you have any of the following? (For example, physical impairment or disability, sight or hearing loss, a mental health problem or illness)

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

27. Did someone help you to complete this questionnaire?

Note: questions 28 to 30 are demographic questions that can be asked or taken from locally held data. Question 31 is for local use and not for submission in the survey data return.

32. Would you be happy to be invited to take part in more research? (Optional field)

Eligible population

The ‘Eligible population’ tab collects data on:

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

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

Validation comments

The ‘Validation tables’ tab has been included in the data return to help validate the data within the ‘Carers data’ tab. This also provides a series of comment boxes to complete should the return have missing data. This is where you should record explanations for any boxes left blank. This information is required to remove unnecessary validation queries from DHSC.

Survey process information

The ‘Survey process information’ tab asks about the survey process and methodology, for example, the minimum requirement for responses and the use of additional questions. There is also a space to make general comments about the survey.

This information is used by DHSC to understand how you have experienced the completion of the survey and to inform future development.

Timetable

Before 30 September 2025

Before sending out the questionnaires, you must:

• inform and engage senior management and obtain permission to send out questionnaires to carers
• finalise questionnaires and materials
• extract the eligible population data including auxiliary information
• check eligible population data is complete, accurate and current
• remove from the eligible population figure those carers known to have been incorrectly included due to records being out of date
• determine the required sample size
• select the primary sample
• select the reserve sample (if you wish at this point)
• determine which questionnaire to send to each carer
• identify those carers who should not be sent a questionnaire

5 September 2025

The deadline for any additional question requests is 5 September 2025.

Between 1 October and 30 November 2025

During the fieldwork period (1 October to 30 November 2025), you must:

• send the questionnaires out to carers
• follow up with any non-respondents
• select the top-up sample to compensate for low responses if necessary (if a reserve sample has not already been determined)
• send questionnaires to the top-up sample if necessary

Between 1 December 2025 and 26 February 2026

Between 1 December 2025 and 26 February 2026, you must:

• transfer questionnaire data to the survey data return
• validate the survey data return
• submit the data using the SDCS

26 February 2026

The submission deadline for all SACE survey data returns through SDCS is 26 February 2026.

12 March 2026

The deadline for survey data quality reports to be sent to local authorities is 12 March 2026.

2 April 2026

The final submission deadline is 2 April 2026.

Further information sources

There is a considerable overlap of methodology between this survey and the Adult Social Care Survey (ASCS), which was reviewed in 2010 to 2011 by the Office for National Statistics (ONS). More information can be found in their report Review of methodology for the national adult social care user experience survey (archived PDF, 436 KB).

The Personal Social Services Research Unit (PSSRU) at the University of Kent and London School of Economics and Political Sciences produced a document about the development and testing of SACE called the Personal social services survey of adult carers in England - 2009 to 2010: survey development project technical report. This document contains information on the rationale of the questionnaire design and provides details to aid interpretation of survey results. In addition, this document contains examples of question wording that carers found confusing, making it a useful resource on what to avoid for future survey design.

Another relevant document is ‘Developing a carer’s experience performance indicator’: PSSRU discussion paper 2734. This document outlines the development work undertaken by PSSRU in developing questions 7 to 12 of the questionnaire. These questions are scored and summed together to form the carer social-care related quality of life measure (carer SCRQoL), and are used to populate ASCOF 1D.

There are also a number of ways in which CASSRs can learn from each other, and from other organisations, in relation to completion of user surveys:

• the CASSR members of the Social Services User Survey Group (SSUSG) are able to facilitate the sharing of knowledge about the surveys, and often have links to regional Association of Directors of Adult Social Services (ADASS) branches
• linking with colleagues in other CASSRs, particularly those where survey results and ASCOF outcomes differ

Social Services User Survey Group (SSUSG)

The SACE questionnaire, methodology and guidance has been designed in consultation with the SSUSG. SSUSG advises on social services user experience surveys, and the development of their content and methodology.

The group includes:

• DHSC
• NHS England statisticians
• council representatives
• Care Quality Commission (CQC)
• researchers from the PSSRU based at the University of Kent

The survey has been approved by ADASS.