I have a question

You have been invited to take part in the survey

Yes, Picker offers an interpretation service, where the questionnaire can be filled in over the telephone.

Please call 08000 720 069 to use this service.

Yes, that’s fine. Children or parents are able to get help from a family member or friend if they need help to complete the questionnaire. However the answers should be given from your point of view- not the point of view of the person helping you to complete the survey. Picker also provides a Freephone helpline (08000 720 069) where call advisors are available to complete the survey with children and parents over the telephone (please refer to the covering letter that came with the questionnaire, for information).

No, if you do not want to take part, please return the blank questionnaire. You do not need to use a stamp. If you prefer, please email Picker (under16cancersurvey@PickerEurope.ac.uk) or call the helpline number (08000 720 069) and Picker will remove you from the current survey mailing list. This will ensure we don’t write to you again about the current survey. You do not need to give us a reason and it will not affect the care you receive from the NHS in any way. If you have told us you do not want to take part, you will not receive any further reminder letters to complete the questionnaire. If a mailing is already underway then you may receive a reminder letter in the post, but please ignore this.

If we do not hear from you in 2-3 weeks, we will send you a reminder.

If your child is aged 8-16, there are two sections to the questionnaire (one for children and one for parents). The questionnaire can be returned with either, both or no sections completed (i.e. we will use responses from parents or children who have completed their section of the questionnaire, even if the other section has not been completed).

If you opt-out of participating or do not return a completed questionnaire, we will delete your name and address information at the end of fieldwork. You may also request that all of your information is deleted at any point during the survey fieldwork.

You can find more information about the survey, including how it was developed here. If you have received a survey and have questions, please email under16cancersurvey@PickerEurope.ac.uk or phone the Freephone number 08000 720 069.

Your personal details and some information about your cancer treatment have been used to identify you for this survey and will be used to analyse the results. These details were provided by the NHS trust that treated you. The details have been shared with Picker, who are carrying out the survey on behalf of NHS England. Under data protection legislation NHS England is the controller responsible for the processing of your personal data to conduct the survey. Your personal information will be handled securely, and the results published will not identify you.

Section 251 approval is provided by the Confidentiality Advisory Group (CAG) at the Health Research Agency (HRA) ahead of any personal information being shared by NHS trusts with Picker. The Section 251 approval allows your details to be shared without your consent.

Each questionnaire has a unique number which is used by Picker to identify who has responded to the survey, and to send reminders to those who have not.

There are several ways to complete the questionnaire:

You can complete the paper questionnaire that has been sent to your postal address, and send it back in the freepost envelope provided
You can complete the online version of the survey
You can complete it over the telephone by calling the Freephone helpline.

The personal information used to identify you will be held securely and in accordance with the General Data Protection Regulation. This includes the right for you to have your personal data erased. Your details will be kept for up to 12 months after publication of the survey results. This will allow us to complete the survey mailings. At the end of fieldwork, we will delete the name and address information of anyone who opts out of participating or who does not return a completed questionnaire. You also have the right to remove your personal data at any point during the survey fieldwork; if you request your personal data are removed from this survey, you may still be sent future surveys if your child is receiving care related to their cancer or tumour.

Picker takes its information security responsibilities very seriously and applies various precautions to ensure your information is protected at all times from loss, theft or misuse. Security precautions include appropriate physical security of offices and controlled and limited access to computer systems. Stringent measures have been taken to ensure personal information is securely stored and seen only by the personnel directly involved in the survey.

Picker has regular internal and external audits of its information security controls and working practices, and is accredited to the International Standard for Information Security, ISO 27001.

For information about how NHS England uses personal data and how you can contact us and invoke your rights as a data subject, please see our privacy notice: https://www.england.nhs.uk/contact-us/privacy-notice/. You can obtain a copy of this by contacting our Customer Contact Centre: Telephone: 0300 311 22 33; Email: england.contactus@nhs.net; Post: NHS England, PO Box 16738, Redditch, B97 9PT.

If you have any questions or concerns, please contact the NHS England Insight & Feedback team: england.insight-queries@nhs.net.

If you have any questions relating to data protection, please contact NHS England’s Data Protection Office: england.dpo@nhs.net.

You have the right to make a complaint against NHS England regarding data protection issues with the Information Commissioner’s Office: https://ico.org.uk/concerns/.

Picker cannot help with any other query or complaint you may have relating to your experiences of children’s NHS cancer services. Picker is only running the Under 16s Cancer Patient Experience Survey on behalf of NHS England.

If you want to make a comment or complain about children’s NHS cancer services, you will need to contact the Patient Advice and Liaison Service (PALS), the complaints manager or patient services manager for the NHS trust where you or your child received care. A list of relevant contacts can be found here. Each Trust has a member of staff responsible for complaints who will try to resolve the matter with you.

Alternatively, you can contact NHS England:
- Email: england.contactus@nhs.net with "For the attention of the complaints team" in the subject line
- Phone 0300 311 22 33

More information about making a complaint can be found on the following websites:

- https://www.england.nhs.uk/contact-us/complaint/
- http://www.nhs.uk/NHSEngland/complaints-and-feedback/Pages/nhs-complaints.aspx

The Under 16 Cancer Patient Experience Survey invites children who have recently received care for cancer or a non-malignant brain, other central nervous system, intracranial tumour, or non-cancerous blood diseases, and their parents, to let us know about their care. Careful checks are carried out ahead of the survey mailings to remove children who may have recently passed away, so we apologise that you received a survey. If you would still like to take part then please complete and return the questionnaire. If you would like to be removed from the survey, please contact us. We will need to take your personal reference number (PRN), which is located on the front of the covering letter.

Anyone who has received treatment or care relating to cancer in the last 12 months could receive a survey. This includes children (and their parents/carers) who:

currently have cancer
have had cancer in the past but are now better/in remission/ recovered, and are receiving follow-up care
have had cancer in the past but are now better/in remission/ recovered, and have recently had an appointment, hospital visit, operation or procedure in relation to their past cancer
have a non-malignant brain, other central nervous system or intracranial tumour, or non-cancerous blood disease

No. You don’t have to answer every question if you don’t want to.

You can contact Picker by:
• Email: under16cancersurvey@PickerEurope.ac.uk
• Phone: call our Freephone number 08000 720 069

Alternatively, if this is the first time you received the questionnaire you will soon receive a second copy.

Your answers are put together with the answers from other people who take part.

Your individual answers to the questions will be kept confidential by Picker, and by approved NHS England staff and researchers. Nobody will be able to identify you in any results that are published.

The results will be published on this website under the ‘Results’ page.

The results are used to help understand and improve people's experiences of children’s cancer care services.

Picker, and approved NHS England staff and researchers, treat individual answers as confidential and adhere to all aspects and provisions of the General Data Protection Regulation and all other relevant legislation, including requirements for secure storage.

NHS staff will not know if you take part or not.

No responses will be published individually: all findings are published either at NHS provider site/ NHS Trust level or across England as a whole.

To further protect confidentiality, the data will not be reported for questions where a small number of responses are received. Further information about this can be found with the survey results technical documentation.

By participating in the survey, you give permission for us to send your survey response data to the National Disease Registration Service (NDRS) at NHS Digital where it will be included in the cancer registry (you can find out more at www.ndrs.nhs.uk). The NDRS will link your survey responses to your health data using your NHS number date of birth and postcode. Survey responses linked to data about individual patient’s diagnosis, care and treatment can be used by the NHS and researchers to support the planning of cancer services and other research. NHS Digital take great care to keep the information they hold about people confidential and, as with other medical records, strict ethical and security safeguards are in place and access is strictly controlled.

Cancer registration data, including your survey responses, may be shared with the NHS and researchers through the Data Access Request Service (DARS). DARS makes sure that access to data is according to strict data protection laws and that such data sharing will be of benefit to health and social care.

Information that does not directly identify you may be made available to research organisations. Any research organisation analysing the data will be subject to strict rules for the security and confidentiality of your information. They will not use your details for other purposes.

Your answers and personal information will not be shared with others unless required by law or where there is a clear overriding public interest.

Picker are carrying out the survey on behalf of NHS England. NHS England is the organisation that leads the National Health Service (NHS) in England. Picker are a healthcare research charity based in Oxford.

People aged 16 and over who have been treated for cancer during a specified time period are invited to take part in a separate survey called the National Cancer Patient Experience Survey. For more information about this survey, please visit the survey website.

You have been sent a questionnaire as a parent or carer of a child who has recently received NHS cancer or tumour care or treatment in England. Parents of children aged under 16 at the time of their care, with a diagnosis of cancer or a non-malignant brain, other central nervous system or intracranial tumour, are being contacted. Both children and parents are invited to give feedback. The questionnaire asks about about your experiences of children's NHS cancer and tumour care.

Your views are very important in helping us understand how children’s NHS cancer and tumour services can be improved. Even if you have filled in a questionnaire before, it’s still really important that we hear from you. There is more information about the survey on the ‘About the survey’ page.

You want to know more about the survey

No. The Department of Health and Social Care has confirmed that the National Data Guardian opt-out does not apply to this survey.

Feedback can be provided through the Patient Advice and Liaison Service (PALS) or patient services manager for the NHS trust where you or your child received care. A list of relevant contacts can be found here.

Specific complaints can also be made through the Trust where your child received their care. Each Trust has a member of staff responsible for complaints who will try to resolve the matter with you.

Alternatively, you can contact NHS England:

-Email: england.contactus@nhs.net with "For the attention of the complaints team" in the subject line

-Phone: 0300 311 22 33

More information about making a complaint can be found on the following websites:

-https://www.england.nhs.uk/contact-us/complaint/

-http://www.nhs.uk/NHSEngland/complaints-and-feedback/Pages/nhs-complaints.aspx

Going forwards, the U16 CPES will be published as ‘management information’ rather than as ‘experimental statistics’ (now referred to as ‘official statistics in development’) because its known limitations in size mean that it cannot fully demonstrate ‘official statistics’ standards. Although we have made a change in status from ‘experimental statistics’, in practice we have maintained the same rigorous approach to survey collection, data production, reporting and quality assurance as in previous years. This means there is no material difference to the publication as a result of this new status and we encourage use of the results to identify and drive improvement. For further information please see the Technical Appendix.

NHS England’s lawful basis for carrying out the survey is covered as a ‘public task’ under Article 6(1)(e). This provides a lawful basis for processing personal data where:

“…processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”.

In addition, NHS England's lawful basis for using special category (health) data to carry out the data is covered under Article 9(2)(h):

“9(2)(h) processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3…”

Survey results will be made available on this website as soon as possible after each fieldwork period, after allowing time for paper surveys to be returned and the data to be quality checked.

It is not practicable to seek patient consent before sending out surveys. Therefore, ahead of contacting trusts to share patient data for the purposes of the survey, NHS England, and Picker ensure that Section 251 approval is in place. We therefore do not consider that consent is required to include patients in the survey. However, patients must be given the opportunity to opt-out, and this is achieved via fair processing notices displayed in areas where children receive cancer care.

You are an NHS provider running the survey

No. The Department of Health and Social Care has confirmed that the National Data Guardian opt-out does not apply to this survey.

Picker takes its information security responsibilities very seriously and applies various precautions to ensure personal information is protected at all times from loss, theft or misuse. Security precautions include appropriate physical security of offices and controlled and limited access to computer systems. Stringent measures have been taken to ensure personal information is securely stored and seen only by the personnel directly involved in the survey.

Picker has regular internal and external audits of its information security controls and working practices, and is accredited to the International Standard for Information Security, ISO 27001.

Picker are compliant with the Data Security and Protection Toolkit which enables organisations to demonstrate that the way they hold and process information meets information governance policies and standards.

The NHS trust must take steps to ensure that patient personal data shared with Picker is done in a secure way by following the guidance provided by Picker to compile and share your patient sample (available in the sampling handbook/guidance manual).

From launch, the survey will run every twelve months.

NHS England will write to all participating NHS trusts to keep them informed about survey requirements and timings.

The personal information used to identify respondents will be held securely and in accordance with the General Data Protection Regulation. This includes the right for respondents to have their personal data erased. Respondent details will be kept for up to 12 months after publication of the survey results. This will allow us to complete the survey mailings. At the end of fieldwork, we will delete the name and address information of anyone who opts out of participating or who does not return a completed questionnaire. Respondents also have the right to remove their personal data at any point during the survey fieldwork; respondents who request that their personal data are removed from this survey may still be sent future surveys if their child is receiving care related to their cancer or tumour.

All participating NHS trusts have been provided with fair processing information (posters/leaflets/web text). The purpose of this material is to publicise the survey to patients ahead of fieldwork and provide parents and children who are eligible for the survey with a mechanism to opt-out of the survey in advance, should they wish to do so.

Patients should be included as long as they have a confirmed diagnosis (as per the ICD10/11 inclusion codes), are aware of their diagnosis (which may only be possible via manual checks of the sample), and if the care and treatment is considered to be part of the cancer care pathway. This means that patients may sometimes be under the care of someone other than an oncologist or a haematologist for their cancer (e.g. a neurosurgeon or member of a patient’s wider multi-disciplinary team).

NHS England’s lawful basis for carrying out the survey is covered as a ‘public task’ under Article 6(1)(e). This provides a lawful basis for processing personal data where:

“…processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”.

In addition, NHS England's lawful basis for using special category (health) data to carry out the data is covered under Article 9(2)(h):

Survey results will be made available on this website as soon as possible after each fieldwork period, after allowing time for paper surveys to be returned and the data to be quality checked.

Personal patient details are shared by the NHS Trust with Picker, who are carrying out the survey on behalf of NHS England. Under data protection legislation NHS England is the controller responsible for the processing of your personal data to conduct the survey.

The survey data – with NHS Number, postcode and date of birth, but not name and full address – will be shared with NHS Digital for further analysis linked to the National Cancer Registration and Analysis Service database.

Information that does not directly identify patients may be made available to research organisations. Any research organisation analysing the data will be subject to strict rules for the security and confidentiality of patient information. They will not use patient details for other purposes.

Your answers and personal information will not be shared with others unless required by law or where there is a clear overriding public interest.

NHS England may use the results to understand care quality at a local, regional and national level. We may share anonymised survey data with other organisations to help them with their work. This does not include name and address information. It does include information submitted on the sample file, and demographic information completed by the respondent in the ‘about you’ section of the questionnaire, which may include gender, year of birth and ethnicity.