VOICES Survey County Durham (Views of Informal Carers – Evaluation of Services)

The Office for National Statistics (ONS) are carrying out this important study, on behalf of St Cuthbert's Hospice. The aim of this study is to understand people's experiences of end-of-life care, focusing on the quality of care and services received across the health and social care system. The ONS are in collaboration with St Cuthbert's Hospice, and County Durham and Darlington NHS Foundation Trust. This study will ask you questions about your experiences regarding the health and social care system in the final three months of someone's life.

If you have registered the death of a relative or friend in the area of County Durham, you have the unique opportunity to tell us about your experiences. We want to accurately reflect your experiences of caring for someone and their end-of-life care. Your responses will provide us with information that is not available from any other sources. You will be helping St Cuthbert's Hospice to evaluate and improve the way that care is delivered to people at the end of their lives.

The study will cover a range of topics, including:

• information about you

• information about the person whose death was registered

• their overall health and care in the last three months of their life

• the support you and the person received in the last few months of their life

• information about the person's death

The questions we ask can be based on both facts and opinions.

We understand that coping with the loss of a loved one is not easy and we really appreciate you taking the time to take part in this survey. You do not need any specialist knowledge to take part. There are no right or wrong answers - your honest responses are vital for us to produce reliable statistics.

We respect your right to a private life - the information you provide in this study will not be used to identify you in any way.

Some of the questions are entirely voluntary. If you do not want to answer these questions, you do not have to. Please answer as many questions as you can, to ensure that your experiences and circumstances are counted.

This survey is being funded by St Cuthbert's Hospice who have paid for the Office for National Statistics' services. Any details you provide will be combined with those of everyone else taking part so we can produce statistics. Any data we or St Cuthbert's Hospice publish will never identify you.

Your personal information will remain confidential.

We or St Cuthbert's Hospice will not sell on your data and you will not receive junk mail or marketing calls as a result of taking part in the study.

If you want to know more, please see our commitment to protecting your data.

You should have received a letter from us inviting you to take part and introducing the study.

Your letter will include all the instructions and log in details you need - this study is available for you to complete at any time until the closing date stated in your letter.

We design our studies with you in mind and keep them as short as possible. We only collect the information we need to better understand our society. Your response is really important to us.

This study is being funded by St Cuthbert's Hospice but is being carried out by the Office for National Statistics (ONS) in collaboration with St Cuthbert's Hospice, and County Durham and Darlington NHS Foundation Trust. The ONS are the country's largest producer of statistics.

We are:

• independent, unbiased and impartial: we are separate from other organisations and do not allow anything to influence the statistics we publish

• the only organisation that produces official statistics as a primary role: we have no additional interest in the information we collect

• only interested in society as a whole, and not you as an individual: statistics represent groups of people; we remove your personal details as we are not interested in singling you out

We are not:

• a commercial or market research organisation: we do not work for profit and will not try to sell you anything

• associated with any political parties: we produce official statistics, no matter who the Prime Minister or political party in government is

• going to sell on your data under any circumstances: we value your involvement in our studies and do not profit from your data; you will not receive any "junk mail" as a result of taking part

• monitoring you, as the data you give are only used for producing statistics: we will not use your information to contact you about other matters such as your tax, income or benefits, and we will not provide your information to anyone else for them to do so either

Read more about what we do at the ONS.

The Office for National Statistics has access to death registration records, and has selected names at random who have registered a death in the County Durham area between the dates of 20 October 2022 and 18 April 2023. Although your name has been selected from these records, the ONS will not pass on any of your details to St Cuthbert's Hospice or their collaborative partners. There is no way in which you can be identified by your response.

If you registered the death and do not feel like you are the most appropriate person to answer the survey, a relative or friend of the deceased person can take part in the survey instead.

How is it that the ONS hold death registration information?

The General Register Office, part of His Majesty's Passport Office (HMPO), shares death registration information with the Office for National Statistics (ONS) on the basis that it is not disclosed to anyone in an identifiable format without the individual's specific permission. See HMPO's data sharing principles. The legal basis by which the ONS collects and holds data is set out in the Statistical Registration and Service Act 2007.

The Office for National Statistics (ONS) is using a third party, SmartSurvey, to carry out the data collection aspects of this online study. However, the ONS will receive all data collected and remain in control of all responses given by all study participants. A paper copy of the questionnaire is also available, which participants can request (contact details are found on the invitation letter).

Who designed the study?

The questionnaire was designed by the ONS with input from St Cuthbert's Hospice, and County Durham and Darlington NHS Foundation Trust.

1. Follow the link provided in your invitation letter to access the study on your computer, smartphone or tablet.

2. Read the introduction page and click "Next Page".

3. Enter your unique identification code (ID) found on your invitation letter when prompted, and continue with the survey. Our stakeholders or anyone else will not be able to identify you using this ID.

4. Complete the survey and click "Finish survey".

A paper copy of the questionnaire is also available, which you can request using the contact details found on your invitation letter. The paper questionnaire will also include a free envelope and stamp to send back to the ONS' offices.

When do I need to complete the study by?

You should aim to complete the study by the date indicated on your invitation letter.

Where can I find the URL or link to access the online study?

The link for completing the study online is printed on the invitation letter you should have received.

Can I take a break part way through?

We would advise you to start the survey when you have time to complete it. It will only take between 20 and 25 minutes of your time. Unfortunately, the survey platform currently does not allow questionnaires to be saved part way through and to be finished at a later point. If you were to close your browser window before completing and submitting the survey, your answers will not count and will have to begin again. The responses you have given up to that point will not be accessible to anyone.

Why have I not received an invite, and how do I get one?

To ensure the study is valid, only those who are invited are able to participate in the study. The people invited are those who have registered a death within County Durham between the dates of 20 October 2022 and 18 April 2023. If you registered a death and were invited to take part in this study but feel like you are not the most appropriate person to answer the questions, a friend or relative of the deceased can take part instead.

I have already been asked to take part in this study or something similar before, why have I been asked again?

Occasionally, some people do get invited to take part in our studies more than once. If you have already taken part in the past, we still want to hear from you.

Taking part is completely voluntary. However, your response is extremely important to make sure your voice counts in producing reliable statistics for decision-making. For us to get an accurate picture on end-of-life care in your local area it is vital that we hear from as many people as possible. If you do decide to take part you may change your mind or choose not to continue in the survey at any time, without having to give a reason for doing so. Please feel free to discuss the survey with your family and friends before making a decision.

Can I take part in the study in another way other than online?

A paper copy of the questionnaire is also available, which you can request using the contact details found on your invitation letter.

Can I complete the study in another language?

Currently, the study is only available in English.

I have completed the online study but I want to change my answers; what do I do?

If you have submitted your response but would like to change your answers, please email Adhoc.social.surveys@ons.gov.uk to let us know.

How can I tell whether my answers have been successfully submitted?

When you complete the study, you will reach a page thanking you for taking part. This means that you have successfully submitted your answers.

The results from this study will be used by scientific advisers, government bodies and health professionals to improve the way that care is delivered to people at the end of their lives. The results are likely to be published in a report by St Cuthbert's Hospice later this year.

How we have selected you

A random selection of people who have registered a death between the dates of 20 October 2022 and 18 April 2023 in the County of Durham area have been invited to take part in this study. If you have been selected, you will receive an invitation through the post from us with information on how to take part.

Will I be identifiable in the results?

No, the information you submit will be treated as confidential as directed by the Code of Practice for Statistics. Any statistics or results produced will not identify you. Any data sent to St Cuthbert's Hospice or County Durham and Darlington NHS Foundation Trust following this survey will not have any identifiable information about you.

Will anyone else see my answers?

We would advise you to complete the study in private. Once you have submitted your study, your answers cannot be accessed through the questionnaire anymore. Once the survey has passed its closing date, the details you provide will be combined with those of everyone else taking part so that we can produce statistics. The statistics will be sent on to St Cuthbert's Hospice, and County Durham and Darlington NHS Foundation Trust, but these details will not be able to identify you in any way.

How will we use the information you provide?

The ONS will use your data for statistical purposes only. We will only share statistical outputs of the data with our stakeholders (St Cuthbert's Hospice, and County Durham and Darlington NHS Foundation Trust) following the Code of Practice for Statistics. In any outputs we share with our stakeholders, your data will not be able to be identifiable.

We do not sell your data on, and you will not receive junk mail or marketing calls as a result of taking part in one of our studies.

How long will you keep the information I provide?

The information you provide will not identify you or your household and will be deleted upon completion of the project in line with the General Data Protection Regulation (GDPR).

What precautions for data protection and confidentiality have been taken?

The ONS adheres to the Code of Practice for Statistics and the Data Protection Act 2018 and processes all personal information with respect, keeping it secure and confidential. Any personal data collected are processed in systems that have been accredited by the ONS, designed to uphold the security of the data and that are subject to regular assessment. Once the study is completed, the ONS will destroy all personal data securely.

How do we ensure your personal information is held securely?

We take our responsibilities to keep your personal information secure very seriously. As such, we take every reasonable precaution to ensure your information is protected from loss, theft or misuse. These precautions include appropriate physical security of our offices, controlled access to computer systems, and use of secure, encrypted internet connections when collecting personal information.

Cookies

SmartSurvey is the service provider used to host this study online. SmartSurvey uses cookies on their website. Cookies are bits of data they store on the device you use to access the SmartSurvey website and services so they can recognise repeat visitors. Each cookie expires after a certain period of time, depending on what it is used it for.

More information on SmartSurvey's Cookie Policy is available.

You can read about the commitments the Office for National Statistics (ONS) makes to those taking part in its studies in our ONS respondent charter for surveys of households and individuals.

If you have a question about how we process your personal data or want to find out more about your rights under data protection legislation, please see our data protection page.

At the ONS, we take our responsibility to the public seriously. It is our policy that we will tell the appropriate authority if we believe there is a serious risk to someone's safety.

We would appreciate your suggestions on how we can improve any of our studies. It would also be great to hear from you if you are happy with the service you have received. You can email us at Adhoc.social.surveys@ons.gov.uk.

If you have queries or concerns, please email us at Adhoc.social.surveys@ons.gov.uk.

For more information about St Cuthbert's Hospice and the work they do, please visit their website.

For further help regarding how to cope with death or loss, please visit Cruse Bereavement Support, who are a charitable organisation that provides help and support to those who have lost loved ones. If you feel that you would like to talk about your feelings or discuss painful memories brought back by completing this questionnaire, please contact 0808 808 1677.